Bittersweet...

Sooo... We had the most AMAZING Easter celebration this year... We decided to get the whole family together (my side and Joe's) to not only celebrate James' first Easter, but also his first birthday...

It's all pretty bittersweet. James turning 1, not knowing what the future holds or how many more Easters or birthdays he will actually see. And I could tell, as some people said goodbye to head home (however many miles they were going), they wondered if this would be the last time they would see him, and it breaks my heart. I'M the lucky one... I get to spend every moment of EVERY day with him...

Total, we had about 70 family members and close friends here... Lots of cooking, tons of great food... It was so great to see everybody come together, feuds forgotten, words forgiven. If only everyone lived like that everyday... Don't sweat the small stuff, don't hold grudges, who knows who will be here with us tomorrow... Sometimes it gets me, how much time people waste being angry or bitter...

Don't they REALIZE how precious every single DAY is?!?!?!?!

What's the word...

If you lose your husband, you're a WIDOW.
If you lose your wife, you're a WIDOWER...

What are you when you lose a child???

Just another day...

I am having a really bad week... I don't know what's different this week as opposed to every other week, but... I've been crying a lot. I've reached the point where I feel like everything I'm doing is completely WRONG... Like God made a mistake when he "chose" me to take care of James, and Joseph for that matter.

I can't keep up with laundry, dishes, etc... I would rather sit on the couch and watch a movie with the boys than clean... I don't think any person really LIKES to clean, but "normal" people find a reason to get off their a$$es and I just can't seem to find the motivation anymore. Am I depressed, um probably... Overstressed? Maybe just a little. I just don't get it... I want it done, I do... But I just can't drag myself to do it. I'm worn out, exhausted, depressed, sad, mad, frustrated, pissed off, angry, annoyed, irritated, resentful and every other feeling you can imagine...

My Mom is trying to help us get more organized. But I just don't know where to start... Maybe I do just need her to kick me in the tush to get me started... I don't know. I am feeling better today than I was two days ago... I cried all day on Wednesday. Don't know why... Joe would ask what was wrong, and I honestly and truly couldn't say. Maybe I just needed a good cryfest week... We'll see... I hope it just keeps getting better rather than worse. I know I'll have my "days," but hopefully not weeks like this one. Oh well.

Home again....

Well, we got home three nights ago and James is doing well. He is running his fever cycle though... (sigh) I wish there was a way to prevent these from happening.... Oh, well...

James had surgery last Friday, before we left the hospital... Nothing major, it was actually considered an out-patient procedure, but since he was already an in-patient, we stayed another night anyway... They placed a mediport!!! YAY!!! What this is, is a permanent IV that is completely under the skin. It runs under his left collar bone into one of the main veins.... This means he will ALWAYS have access.... SO, we shouldn't have to be sent to St. Marys or even Denver as often since they will have a way to draw blood and give life saving medications now....

Part of the reason Delta Hospital didn't like having him as a patient was because there was NO way to get IV access. His low muscle tone and heart condition make it really hard to find a vein...

Anyway... We're happy to be home... Trying to get all James' therapy sessions and nurse visits rescheduled... Today we spent the morning at the doctor's office and the hospital, getting bloodwork.... Unfortunately his sodium level has dropped again... :( I don't know what the doctor wants to do yet, but I'm guessing another blood draw to check again tomorrow... Sometimes it seems like it will never end, but you know what, as long as it continues, that means he's here with us.... SO, I'm pretty willing to sacrifice.... Mommy loves you James. :)

Still at TCH....

Sorry everyone for not keeping this more updated... We are still here at Children's Hospital in Denver. Fortunately, James got through his pneumonia and is sounding MUCH better. His oxygen requirement has gone back to normal and we are suctioning his nose A LOT less...

Unfortunately, James' sodium levels have been too low. They are calling it SIADH, which stands for Syndrome of Inadequate Anti-Diuretic Hormone. His little body is retaining fluid and not letting it pass... Sooooo, for the last 3 days, they have been poking him every 3 hours to get blood to check his sodium levels. Saturday morning they came up to normal range, so they increased his food. But by the afternoon his levels had dropped again. If his levels get too low it could cause seizures or even heart failure. But they have really been on top of things and before his numbers could get that low they started giving him sodium chloride. Today his numbers are back in the normal range, so they increased his feedings again about 3 hours ago. His next blood draw is at midnight (1 hour from now) and hopefully his levels are staying the same. If he drops down again we'll have to decrease his food again... He is only getting 15mls of food per hour. That's 3 teaspoons of fluid... The doctor said that it's just enough to keep him hydrated, because even though he is retaining fluid, the sodium levels are telling his body it is dehydrated.

If all goes well they will increase his food slowly over the next day or two and if his sodium levels stay normal and they get him to his goal feeding, which is 43ml/hour, we get to go home.... Our fingers are crossed. I have a lot of faith in my little man, he has pulled through so much, I know he can get through this...

TCH

So... Here we sit at Children's Hospital yet again. Unfortunately, this visit isn't going as great as last visit. It seems the doctors aren't listening to us... Hmmm, maybe they should go work at St. Mary's... Anyway... We sat here ALL day yesterday after the doctors had come in, waiting to see what they were going to do. Not one thing was done yesterday, then they wanted to send us HOME this morning.

He is doing better as far as his oxygen requirement. He is back down to "baseline" which is 1 liter. When we flew here he was on 3 liters in the airplaine, or as Joseph says, hairplane. Unfortunately, he can't lay on his left side because his oxygen saturation drops into the low-mid 80s. We do know from the xray done on Tuesday at Delta Hospital, that his pneumonia is in his left side, so it makes sense that he has a harder time breathing when laying on that side.

His blood pressures have been pretty high for him and we had mentioned it to the doctors yesterday, but they weren't going to call in the cardiologist until I insisted on seeing one today. He seemed surprised that the team hadn't ordered a new chest xray because his heart was larger in the xray from Tuesday. So, the xray was done late this afternoon, so we should have results in the morning. And they are also going to do another echo to make sure his heart is doing ok.

When his pediatrician (we love you Dr. Moore) called to have him admitted Tuesday, she spoke to the pulmonology attending to get things started. Stating that he needed to SEE a pulmonologist, get started on vibration therapy and be evaluated. WE HAVE NOT SEEN A PULMONOLOGIST. The doctors have not called in the pulmonology team. Does that make any sense???????????? He is here for chronic lung problems and they are ready to send him HOME without even doing what he was sent here to have done. I was so upset this morning.... I cried and cried and cried.... If they do NOT listen to us tomorrow, I am asking, no insisting, on a different team of doctors. I am so tired of some doctors treating US like we are over reacting. This is my child!!! He is not like a "normal" kid with a cold, any small lung infection can KILL him... What don't they get???

GRRRRR!!!!!!!!!!!!!!!!

Another day of running around to hospitals...

When Joe got home from work this morning he woke me up because James was running a fever. I looked into his bed and he was working SO hard to breathe. Even harder than yesterday. We gave him a neb treatment and I called the doctor to see what his x-ray showed from yesterday. No pneumonia, which is good news, but the radiologist said he could tell that his lungs were in bad shape, pneumonia or not. The doctor wanted James hospitalized to go through percussion therapy with a respiratory therapist IN the hospital. She said she wanted them to use a vibration vest (?) to help keep James' lungs clear. She told me they use these a lot in children and adults with cystic fibrosis. Fortunately James has tested negative for CF... She called the local hospital and they didn't want the responsibility, again, they are not really equipped for children and James truly scares all of the nurses at Delta Hospital... SOOO, quickly we packed ourselves up for another hospital stay. His doc spoke with a pediatrician from St. Mary's, she said to go through the ER, tell them what was going on, and then they could admit him for treatment from there. Well, that didn't happen. The ER doc treated us like we were over-reacting, which maybe I do once in awhile, but when it comes to a child with severe disabilities and illnesses, I think I have EVERY right to OVER react!!! On top of that, nobody in the Grand Junction area even had the vibration vest they needed in order to do the treatment the doctor had originally wanted, and since it was Friday afternoon, the chances of us getting one soon were pretty much nil. So he was ready to send us home. After Joe and I talked for a few, we decided we weren't really comfortable with this for a few reasons... One, we live about 45 minutes away. Two, it was snowing like CRAZY. Three, he was running a fever, having a hard time breathing and wheezing. I told the doctor my concerns and guess what he said to me.... "Insurance doesn't pay for mom's peace of mind." And that Joe and I don't need to bring James in for every cough or cold, that we should "learn to manage his care a little better."

WHAT?!?!?!?!?!?!

Let me just say this.... That dr is lucky he went home with all his teeth today...

So, we are at home with James. He seems to be doing a little better. Fever is gone. We are doing neb treatments every 3 hours instead of 4 and we have him in his little vibrating bouncer seat. They wanted vibration, right? We'll do it ourselves. I think we are managing just fine.