Waiting, and waiting, and....

Waiting. There is a lot of waiting around these parts, and its not the happy, fun excited kind. Its the desperate kind.

 

Desperate because it seems like Eddies apnea is getting worse and worse, and were are trapped in a sort of stasis at the moment, and desperate because, the new year is rapidly approaching, and our deductible resets. The deductible is almost 20% of my husbands gross pay. Digest that for a moment.

 

We are still waiting for the date for the new sleep study, still waiting on the home oximitry testing. I called Apria today, and the say they never got an order, but faxed one over for me.

 

So there you go.

 

Eddie stands on his own now, and babbles a lot. I keep wondering when he will walk, but he spends a lot of time perched on his tip-toes, so I think it will be a while.

 

Tomorrow he sees his GI doctor. That visit will be interesting. Mostly because I have a lot to say in regards to how Miller Children's handled things with Eddie; and why I don't want him put there, ever again.

 

I have been getting less and less sleep. I want a different monitor, something for only heart rate, or only o2 sats. Something that warns me that things are bad, not just that he is not breathing adequately again.

 

 

That might seem whiny, but Saturday night I ended up getting up at four am, and giving up on sleep. It went off (what felt like ) two or three times an hour. When it was not going off he was screaming his head off.  You can't sleep through that. Trust me.

 

Last night he slept in my arms all night, and refused anything less than skin to skin contact. That combined with the monitor screeching every hour or so has left me in a pretty lousy spot.

 

He's lucky he's so cute, and such a funny sweet guy.

 

 

 

 

A few steps forward

Today we saw the new pulmonologist . We were in the office for an hour and twenty minutes talking to her, and she's going to review all the information and email me tomorrow with a better idea of what we will be doing.

As it stands, it is very likely that Eddie's central apnea is a result of brain injury that occurred during his birth. When he was born, the cord was wrapped around his neck three times. He was in distress, and I was about to have a C-section when he suddenly made his appearance. I had about a week previous to his birth where labor kept starting and stopping, probably because he was in distress.

The doctor told us it could be brain, or brain stem. One gets better, the other doesn't, but it doesn't get worse either .Either way, we wont know how badly he has been affected by it until he gets older and he grows and develops more.  Right now, that is the best guess, but we will need more testing, another sleep study, and an MRI.

I am not sure how I feel. At least we are going in a direction? It just doesn't seem, fair I guess? That he has problems he was born with, problems that he got from being born... I don't know. I do know that I really shouldn't complain. There are people out there with children who are going through bigger issues.

For us, right now, its just testing , and waiting. Hopefully we will get closer to a resolution soon.

There's not much to tell at the moment.  We have the next doctor's appointment on Tuesday,  and hopefully we will have more then.
However, Eddie is teething,  and standing on his own now. Once I figure out how to add video I have a cute one of him chasing one of our cats. This is just a checking in, I will have a real post Tuesday. 

And so it goes

Life has been pretty tame here. Eddie is working on standing, in an effort to get into even more.

I got the files together for the new doctor. His apnea monitor records were over 160 pages long. Four weeks of recording, 84 apnea events. the most in one night was 12.

 

I got all of his other files as well. I found out from reading his bronch report that he also has something called Innominate artery compression . See image 2.

 

I am really hoping that this new doctor can help us, a lot more than anyone else as. Right now we are just waiting. Waiting for the appointment. Waiting to be able to move forward. I look forward to a night where I don't have to tape up his little face to keep the oxygen on, when we don't have to plan around doctors appointments. When things get normal again. Well, as normal, as normal gets.

 

My daughter is starting school on Wednesday. She goes between being excited, and not wanting to. I think that she will be happy once it starts, and it will be a relief to get away from her two annoying little brothers. Edan doesn't start school for another year, and we still have not figured out pre-school for him. I am thinking we will sign him up after the new year. I am hoping that by then we wont be bouncing back and forth so much, making it easier to keep a regular schedule. I am not sure how he will do without his big sister there, though. He idolizes her, as long as she's not making him angry. :)

 

A group of subjects.

My mother in law got my husband and I a membership to Costco, and bought us formula from there yesterday. That was super awesome of her. It is expensive, and I wish Eddie still breastfed for that (and many other reasons) .

 

I was able to pay off one more medical bill today. We will be super tight until next week, but it was nice to be able to kiss it good-bye

 

   My husband asked me if I was sad that he no longer nurses. I am, but I am not going to rip myself apart over it. Between the stress of the first few months of his life, Him being NPO (No products orally) and my inability to get a breast pump or a lactation consultant in a timely manner despite begging , because "Only NICU moms get lactation consults"  while he was in the hospital, my milk dried up really fast.

 

  Sometimes I wonder how different things would be if the doctors had listened to us in those weeks, and if we had gotten the help we had asked for. It does no good to dwell on it, at least, that is what I tell myself.

 

I hold out hopes that the 10th will bring us closer to answers. I lay awake at night worrying about money, about Eddie, and about pretty much everything, and how I am going to get everything done and taken care of before his appointment. It really doesn't help, but my brain just won't turn off.

 

There is currently a Scentsy fundraiser here (ends 8/31)

Our walmart wishlist for the basics is here

and our hero network fundraiser is here



Send coffee

This week none of us were feeling particularly well. It started with Eddie, crying almost non stop, and sleeping horribly. He was congested, and it makes using the oxygen pointless, because if your nose is stuffed up, you are not breathing anything through the nasal cannula.

  By the second night Eddie was sleeping in his swing and I was sleeping on the couch because his apnea monitor would not stop going off. I try and keep track of how many times a night it does, but after a certain point, it was futile.

 We had one scary episode that he was really hard to wake up from. I think it lasted almost a full minute. It was the first time in months I almost called 911. Thankfully he woke up.

   When he has these episodes, it is really surreal. He turns greyish and he's not moving at all , and it seems like we have stepped out of reality for a moment.

 Between now and the 10th, I have to get all of his tests together to take to the new pulmonologist, including the records off his apnea monitor. That I am doing last, because I want her to have everything up to the latest episodes. She wants the detailed event reports so that she can see what exactly is going on, and the days leading up to the nights where it is non stop.

Hopefully we will actually get somewhere this time.

Eddie seems to be feeling better, but his stridor is really bad right now, when he breathes he's either panting, or making this awful barking sound, poor kid. The upside is that he is sleeping better as of last night. I promise to try and have the next post be lest scattered and down, I am just really worn out. Send coffee and yarn.

 

The rest of us

I haven't posted in a while. I did not want to post until I had good news about Eddie's pulmonology appointment. After a lot of phone calls and sitting on hold, he will be seen on the 10th. Not great, But it is better than nothing, and I am taking what I can get.

   His sleep has been awful, and he seems tired all the time. I know I am. I really hope there will be help, and not more questions.

 

 

 This has all be really hard on all of us. The health nurse asked me if I was doing okay on Friday , because I "sounded depressed". Of course I am. This has been trying on all of us, and I have the requisite mothers guilt to go along with it. I lie awake at night asking myself if it was something I did while I was pregnant with him, if this is my fault because I ate something, drank something, took something, and so on. I know I am not the only mother out there who thinks these things, so If you know someone who has a special needs kid? Hug her. Because she probably needs it.

 

  Kurt doesn't really talk about it. He is just as tired as I am. I know he worries as much as I do. I know he's frustrated.

 

 Elyse and Edan, my other two have felt the impact as well. Edan used to be my little side kick, he slept with me, did everything with me, spent the day following me around, and now a lot of my time is taken up with baby things, and dealing with all of Eddies stuff. Elyse , I think feels forgotten about. I try and make time to do things with her, and let her know how much I love her. She compensates by pretending that her baby doll is Eddie, and she is me. We used to take them to do things a lot and now we cant. 

 

    I feel terrible.

 

My mom came out this weekend, to celebrate my birthday early ( I will be be 31 on the 3rd). Kurt and I went to a friends goodbye party ( I will miss her dearly) without the kids. It was the first time in about 8 months. My mom watched them for us. She is a respiratory therapist, and more than qualified to stay with Eddie. Anyone who watches him is supposed to be CPR certified.

    My mom paid for us to have dinner, alone. It was really, really nice.

 

 She went home on Sunday, and made it so Kurt could take the kids to see "Planes" , and so I could get coffee while Eddie and I waited for them after she left. I had been feeling bad, Because Edan really wanted to see it, but it was too costly to take him. She really made his, and my day. Best (early) Birthday weekend ever. I think My kids would agree.