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.

Frustration, part 2.

     Last night the apnea monitor went off about twice an hour. It was one of those nights where I was lying there at 4 am weighing the pros and cons of taking Eddie to the ER. I came to the conclusion that my best option would be to see if I could set up the pulemnology appointment for the soonest they could get us in.

      Today I called the Children's Hospital Pulmenology department,  to make an appointment for Eddie, as all his papers had been faxed over. This was after I had to have Eddies Health nurse contact the ENTs office to get them to fax his records over, because they had not gotten around to it yet.

     The receptionist told me that they would call me to make an appointment after the referrals doctor looked over his paperwork.  That's just to see their doctors, it has nothing to do with medical insurance. 

I asked how long that would take.

Two weeks, up to four. TWO WEEKS. 

     After I pointed out that Eddie needs to be seen ASAP,  because so far no one has a clue as to what to do with him, she told me if it was marked urgent,  they would speed it up.

      The ENT's office tried to tell me that there was nothing they could do.

     I got mad, because no one wants to help Eddie, they just hand him off to someone else, and leave us hanging in red tape. Meanwhile,  every night I go to bed wondering if this will be the night I can't wake him up from an apnea episode. 

      Exhaustion coupled with rage at all the hoops we have been made to jump through, and the apathy towards my son's wellbeing fueled several phone calls.

  The first to the ENTs office, telling the doctor's assistant that I found this unacceptable.  If he was going to push us off on to someone else, than he needed to do everything in his power to make it move faster, because, stopping breathing is not an okay problem to have.
     The second was to patient relations at the hospital.  I relayed the whole mess,  and they are stepping in to try and speed things up as well, agreeing that this is very much not okay. 
I am expecting several phone calls tomorrow.

    Hopefully tonight will be better, and hopefully so will tomorrow.  I don't like having to get angry and pushy. I don't like crying in frustration,  and I really don't like the feeling that Eddie is being treated like just another medical record number, rather that a little boy with his whole life ahead of him.

Frustration

 Today Eddie has his appointment with the ENT at Children's hospital of LA.

 

It took me an hour to get out of the house. We got all loaded up and went on our way .

 ( this kid has a lot of stuff! )

 

 

We got there, saw the ENT, who looked over his sleep study, and his record, and confirmed that the first Supraglottoplasty did not work. We already knew this, but poor Eddie had another in-office laryngoscopy. The doctor stuck the scope down his nose, and looked at everything, and we got the "Yup, still severe" . He then said that he does not want to do anything until Eddie sees the pulmonologist at children's of la, Because Eddie needs an MRI of his brain, because half his apneas are central. He said that Eddie will need another supraglottoplasty, but he wants the pulmonologist there to tell him that he does. This time when they do it though, Eddie will be on a ventilator for 1-2 days after, and in ICU.

 

 

Eddie was referred to this Ent by the pulmonologist at Ceaders. He had said, that before the central apnea could be addressed, the obstructive needed to be taken care of.

 

Can we see where this is going? This is the THRID time this has happened.

 

  I am very frustrated, because I feel like we are going in circles.  I called Eddies pulmonologist , who told us to go with it, because he has no pull there, and it is best just to let theirs look him over , and say the same thing he did.

 

 

I cried most of the way home, and probably looked like a crazy person doing so. I am so mad, and tired, and feel very beaten. My rather immature, childish reaction is to want to scream and yell, but we have to keep plodding on. It's heart breaking , and it feels like we are getting nowhere. (never mind that it is draining on us as a family, both emotionally and financially )

 

 In case you were wondering? Besides the mean nasty doctor sticking the camera down his nose ( and then promptly throwing up everywhere) Eddie wasn't bothered.

 

 

Seriously? I could learn a lesson or two from this little guy. :)

Getting ready for sleep

Getting ready for bed is a bit of a process here in the Gruber Haus

 

First, Eddie gets a clean shirt, the Apnea belt put on, rocked to sleep and tucked in to bed.

 

Then I get the Nasal Cannula ready for bed. During the day and for naps and things, I try not to use tape. The tubing lasts longer this way, and doesn't get gross, so I use two separate cannulas, one for bed, and one for day.

 

   I get the tape ready, and make sure there is enough water in the humidifier. I wipe down his nasal cannula as well. One lasts about three days before it gets too gross to use .

 

 

 

 

Then I tape it to his wee little face. I use a lot because he moves around a lot in his sleep .

 

Then I plug him in to the monitor, and turn it on. The lights go red when something happens, and it emits a loud, ear piercing beep.

 

I make sure it is reading everything the way it should be. It records all apnea events in to its internal memory. Every three weeks or so I have to drive it out to have them clear it off because it gets too full.

 

I put it on the bed by my pillow, it is loud, but I don't want to risk sleeping through it. The thought of that terrifies me. I don't worry during the day , because I am awake, and will hear it.

 

And then? I go to bed. :)

 

 

Thank yous

I am starting thank yous tonight. Once upon a time in a far off land I used to work in a scrap book store. You know, Before I had kids. I have a lot of stuff left over from that time, which is great for thank you making.
     It will be fun.

Thank you to everyone who has donated so far.

Thank you to the stranger who sent us Diapers and wipes.

Thank you to the awesome people who are doing this Scentsy fundraiser to help us.


Thank you a million times over.

One of those nights

Last night classified as one of "those" nights. Eddie slept horribly,  the apnea monitor would not stop going off, and during the worst episodes he would start breathing again by screaming his head off.
He spent most of the night in my arms. First in our bed, then on the couch (I was not sleeping)  nothing could make him comfortable. 
I was very close to calling it quits and taking him to the hospital, something I try desperately to avoid, because they will admit him, and It won't serve much purpose other than to keep an eye on him because we have no game plan yet. That is hopefully for the ninith. 
Now? He's napping peacefully.The only indicator he had a lousy night are the raccoon eyes.  I wish I were too. Send coffee.

We know some really great people

I had a problem. Once Eddie was put on oxygen , it made leaving a lot more taxing. On top of already having to take his apnea monitor everywhere, I now had a  big whopping oxygen tank for when he sleeps, because he can not maintain his o2 saturation See this link. His numbers drop in to the low 70's. We have been direly warned that this can damage his developing brain if we don't stay on top of it.

 

 

   I wanted to get a wagon to pull him around in, instead of a stroller, because, take my word for it, a stroller lacks the room the hold all the stuff he comes with. Dragging him around in the stroller was a huge trial. I take public transportation to most of his doctors visits, because it saves a lot of money in gas, but a lot of times it was cumbersome and awkward. (Like lifting him out of the stroller and having the whole thing tip over in the middle of the aisle of the train while he is crying)  I had one on our Wal-Mart wish list, but had not really expected anyone to get it. It was more of save our pennies kind of thing.

 

      Some friends of ours, D&J, My husband's co-workers, and all around great people asked us to take the wagon off of our list, that they would get it for us.

      I cried. I am very, very thankful.

 

 

We added Velcro straps to the side under the rail to strap the tank in. There is lots of storage under the seat, a lot of cup holders and a little cooler bag, which , while intended for food, fits the apnea monitor perfectly. It even has an umbrella for shade.

 

 If I fold a blanket in half, it will be nice and cozy for his naps. He always falls asleep on the train, which gives me some time to relax.

 

We know some really great people. Have I mentioned that ? Thank you again D. and J. You guys rock!

 

The story so far ...

                      Eddie was born on January 17, 2013 after fourteen hours of labor. He was a whopping 8 pounds, 6 ounces, and an entire week early.

    

(please keep in mind, I have glossed over a lot, and left out a lot, and forgot probably even more. Short of shuffling through medical records, this is what you get)


   When he was in the hospital, he had a little trouble breathing, but a lot of newborns do. It was considered normal.

    When he was about five days old, I rushed his sister to the hospital, because she had a fever of 104. She was sent home with a diagnosis of pneumonia later that evening.

    She and I got home, and I had to turn around and take him in, because he was blue, and was barely breathing. You could hear him trying to breathe from across the room. He was admitted immediately and we were told that he had RSV. After being there for a day and a half we were sent home, even though his breathing was still very, very loud.

     Less than 24 hours later I took him back. He was blue, and would not wake up. It took five tries for the nurses to get an IV in him. He never opened his eyes.

     That time we were there for a week. We were discharged with an "I don't know. give it a week or two and his breathing issues should resolve, he's a newborn"

  His primary care doctor was not happy with this and put him on an apnea monitor and sent us to an ENT.
    The apnea monitor would not stop going off, but that was expected. Then it started going off for low heart rate. That was unexpected. So we took him back to the hospital, where we sat for a week while test after test was run.

                  He had a bronchoscopy, and a laryngoscope, where we found out that he had laryngomalacia and Tracheomalacia . He was also Diagnosed with GERD, They did a sleep study while we were there, but the nurse unplugged all the equipment on accident, so the sleep study was botched. The pulmonologist read it anyways, and said that he could be taken off the apnea monitor, because the small window of time that the equipment was plugged in showed a minimal amount of apnea.

    After being discharged, his primary care said to leave him on it. I am very, very glad we did.

  I woke up one morning to it going off for both heart rate and apnea. Eddie was blue and making a horrible noise like he was choking. I Grabbed him and flipped him on to his stomach and started to call 911, but by the time I had punched in the number he was breathing again.

    He was hospitalized again after talking with his doctor, and more tests were run. He had a PH probe to confirm the GERD. He had ultrasounds of his soft spot , and an ECHO. The Echo showed he has a hole in his heart. He set the alarms off constantly. His breathing would stop, his heart rate would go as low as 50 beats per minute , and his 02 saturation would drop in to the 70's while he slept.
    It was so bad they hung the ambu bag on his crib and kept the crash cart outside his door. After his roommate was discharged, they left that side of the room empty.

      We were sent on our way with another set of "We don't really knows" Along with "Keep him on the apnea monitor"


   At our health insurances request we got a second opinion.

He went to another hospital. He had another surgery, a supraglottoplasty to help open up his airway.

It did not work.

He got a referral for another sleep study .

   We went to Children's of orange county and checked in overnight for their sleep study.


The results came back that he has both obstructive and Central apnea , mostly Central . We were referred to a pulmonologist.

His pulmonologist did another surgical procedure , and told us that it was beyond his scope of practice. After, while in the recovery, his heart stopped. For a few brief, very scary seconds.

 Central apnea is neurological. Obstructive means he needs more surgery on his throat .

Eddie was put on oxygen, because his o2 sats are low enough when he sleeps to hurt his brain.
His medication takes up a whole section of our fridge.

So now, we wait. Next week he sees the next set of specialists, where we hope to find answers, and help for our little guy.