Pnever a dull moment with Pnoah

Facing the fears this week.

Hospital (NOT CHOP) and the dreaded P-word (PNEUMONIA).

Noah was acting a little "off" this week so I knew something was up but just couldn't put my finger on it. He started off cranky then moved onto coughing then into breathing kind of fast then I headed to the Pediatrician's office. I don't really mess around with respiratory issues when it comes to my little Noah so I thought he should have a once over by someone with "MD" after their name.

Needless to say, we were admitted to the hospital after a short visit with our doc.

So we are home finally. I shouldn't say "FINALLY" since we've been in the hospital for a much longer stay and there are kiddos out there who would kill for a 4 day stay. But for us, we feel like we've served our time in such a place and do not like it one little bit when we have to go back.

Official diagnosis: Pneumonia (hence my not so clever title).

Unofficial diagnosis made my Dr Mom (and a few nurses): Infection that would have most likely developed into Pneumonia.

Dr Drama (I do like our pediatrician but I think sometimes he's a touch dramatic when it comes to Noah's diagnoses) was actually the attending doc in the hospital for our last couple of days which was really nice. He let us come home with oxygen and breathing treatments rather than making us stay until Noah is completely free of oxygen support. It's great because knows us and knows No would do better at home and trusts that I will do what I'm supposed to when it comes to his respiratory therapy.

AND let me just say (this is a little hard for me since I consider myself a "CHOP snob"), the hospital, nurses, and docs were amazingly wonderful. Noah got such great care (except for some blood draws by some inexperienced phlebotomists, bless their hearts). The compassion and understanding was tremendous and I cannot say enough good about our experience. They even let me co-sleep with my little man. Unheard of at CHOP! The nurse rolled in a big 'ol hospital bed and I signed a little waiver and that was that!

The doctors did exactly what needed to be done and they got us home pretty quick. I am so grateful! I was nervous going to a rural-ish hospital (ie NOT CHOP) but pleasantly surprised.

So that's that. We are home. Noah is resting comfortably and though he's a bit weak, he's doing awesome. My little ROCKSTAR!

Weight has been lifted...

and it's not the SlimFast (what an awful diet, BTW!).

So, I canceled. I felt like I was calling in sick to work and LYING (like the time I called in sick from an office job in Colorado... in the casino parking lot in Mesquite Nevada.

Todd was a bad influence (although looking back, I think it was my idea)!

::SMILE::

Ahhh...the early days of our relationship. Good times!

It felt good afterward and I actually rescheduled for August, just in case things don't get better and we get desperate.

So I do have some better than average news to report about my little man. Let's just call them "Noah's Developmental Milestones" since he has decided to rewrite that book all together.

First, he has been spending more time on his tummy and less time crying about it. I actually caught him LOOKING around at some toys and a mirror (he didn't think I was watching). He has managed to roll over completely from his tummy to his back (he does tend to stop once he reaches his side but we are occasionally surprised to find him rolling onto his back). And today he started playing a game with me. I started by standing in front of him and then walking a complete circle around him. He actually followed me to his left side then turned his head to the right to "find" me when I came back into view. He did it several times and was rewarded each time with TONS of kisses and YIPPEES! Lastly, I started sitting him up on his mat and using HIS arms to prop up. He'll stay in that position for quite a while before his poor little arms give out. But it's so cool to see!!!

It's been a total blast to see him respond and start doing new STUFF! We are over the top excited and can't wait to just watch him BLOSSOM from here! I just hope he keeps it up (my always guarded optimism). What a little TATER (as in "Tater-Todd", a little nickname I've decided to give him!). :)

See, it's not always terrible and dramatic around here! Some days I'm just beside myself with gratitude. :)

Anxiety!

Do you ever sit around and decide to do something totally time consuming and a complete waste of time just because?

I do.

I've been thinking about how many trips we've made to CHOP since we actually got to bring Noah home. So I broke out the calendars and my "Noah's Medical Journals" (I've been writing down his feeds and throw ups for more than a year now).

We have 4 pending appts in June and am seriously considering canceling one of them.

I am so SICK AND TIRED of the hospital (I do believe I've said that so many times before but I cannot emphasize it enough). It's actually not the hospital itself; it's the preparation, packing, and finally, the drive.

I have such anxiety about the trip. Noah DOES NOT travel well. By that I mean it's all about gagging and throwing up and crying for the 5 hour trip. It's a little hard to concentrate on the road when your kid is choking on vomit. I won't even go into all the baggage that accompanies my little man every time we leave town. Thank God my parents have loaned us their Surburban to drive so I can actually take all the supplies we need.

When your kid has a diet that treats his seizures, food becomes REALLY REALLY important.

Throwing up isn't an option any longer.

Noah had surgery to correct his reflux and thus his throwing up (The fundo, remember?). It didn't really work. He is throwing up and I mean throwing up, like CRAZY! I'm going insane.

I am trying to juggle feeds (every 2.75 hours), free water feeds (1.75 hours post feed, 45 minutes prefeed), throwing up, refeeds, 6 therapists coming to the house, Poor Miss Hanna who is relentless with her ball, the house, and Joey who is incessantly crying for kitty candy.

Now I am having anxiety attacks about an upcoming appt at CHOP that I seriously think is ridiculous. It's the fundo program appt. I just can't imagine what they can tell me. Surgery didn't work? Let's run more tests? More surgery? Re Do? G-tube? See, the thing is I DON'T CARE what they say. We won't have another surgery (one thing I hate more than dr appts is surgery). We won't opt for a tube (it doesn't stop throwing up anyway). The last time they did an upper GI study it was a TOTAL NIGHTMARE.

So I guess I have to resolve myself to this reality.

Noah will always throw up. Walks are a thing of the past. Thank goodness someone decided to drink fermented grapes and then make more for the rest of us.

It's rough. I'm tired. I feel terrible for a boy who will never enjoy eating. But it is what it is. At least he's not having seizures to top things off (knock on wood). He does cry a lot. He hates all therapy. He doesn't like to be touched. But he IS cute as can be and he is mine all mine!

So CHOP, I'm breaking up with you. We have been to visit you every month since Noah came home (Nov 2008) except for 4 (one of those months we went to Detroit to see the Infantile Spasms Guru). 18 months out of 21 we have been to the hospital for one reason or another.

I am DONE, DONE, DONE. Think I will cancel that appt. My baby needs a break (so do I!).

I've been on a bit of a sabbatical lately because I just don't know what to say. There's been a ton on my mind and every time I sit down to sort through things I suddenly get writer's block. Go figure. But I can't leave Noah's "fans" hanging for too long. It's just not fair to you.

So I've decided to sit down and force myself to get some things out.

We are planning a trip back to Colorado (Noah's first visit) in July and I'm nervous. It scares me to leave this environment to which we've both become so accustomed. We are total "home slices" and don't deviate from our usual routine in a good way. But it'll work itself out and it will be good to get out of the house and do SOMETHING. Right?

Noah has changed formula in an attempt to cut out the spitting up (Remember back in the day when we had surgery to stop this?? Yeah, me too). It hasn't worked and the spitting up has become throwing up and is occurring with tremendous frequency. It's really making me crazy and desperate. We've stopped going outside for our walks and are confined to "the room" yet again. Hopefully this will get better. It has to. Right?

We've decided to incorporate a hearing teacher, speech therapist, and a teacher to Noah's schedule (in all our free time between PT, OT, Vision, feeds, and spitting up). Should be interesting. But we are trying to do everything we can to ensure Noah meets his highest potential (God, I hate that freaking phrase.).

That's about it for now. He's up from a nap and I'm back on Puke Patrol.

Back in a funk

I've been feeling kind of blah lately. More frustrated than anything really.

Noah is being Noah. Unpredicatably predictable. Last week, he was in a good mood and somewhat receptive to new forms of therapy. This week, he's been very grouchy, whiny, and uncooperative. He's not into PT and OT this week. He's really into being left alone. I am so ready for strides of massive proportions in a forward direction. NOT sideways or backward.

I want grabbing toys. I want reaching for me. I want giggling. I want laughs, not cries. I want. I want. I want.

It's not really about me. It's about him. He who doesn't WANT to do anything. We've been having conversations about the intrinsic desire to WANT things or his lack thereof. He doesn't WANT to even have the discussion. He does want one thing...to be left alone. I just can't accept that.

So, our days are filled with me trying to convince him to do things and he just disagrees in his Noah way. What is the Noah way? Well, let's just say it's his way of shutting me out.

Umm, he's not sleeping....

...the rest of the story.

Well, our trip to Philly was less than boring, yet again. :)

We went on Sunday and met with my parents, sister, and niece who flew in from KS and CO. It was so excellent to see them and Mallory (my niece) FINALLY got to meet my No-man. She was so incredible with him it brought tears to my eyes. He was taken by her (who wouldn't be as she has grown into such a beautiful young lady of twelve) and she very patiently read to him and stroked his face and head and spoke so sweetly to him. Very very precious. I jokingly say I'm training her to care for him after we die if he requires such care, but I'm not really joking. :)

We got to CHOP around 6 am to check in and do the usual meetings with the docs and nurses and go over procedures. Thankfully No held his O-sats long enough to please the intake nurse (although they weren't quite as high as they should be).

As we sat in the waiting room full of parents waiting just sitting around with their faces full of fear and exhaustion I found myself eavesdropping when the update nurse came by to tell all of us how our kids were doing. Somehow hearing that some kids were going to be in the OR for 6 1/2 hours made me feel a little better (such a selfish thing) and I kept flashing back to No's surgery that lasted hours and hours (his spinal surgery). Oh, that was such an awful wait. Thankfully this one was only about 2 hours.

We got to go back to recovery to wait for him to wake up and our hopes of leaving soon after were sky high. That soon faded when Noah kept dropping his O-sats and really freaking out the nurses. At one point they were trying to secure the seal of the face mask and began bagging my baby. He of course freaked out and I had to say something like..."Just stop and give him a minute!!!". They did and he recovered but they admitted him in the the ICU for the night. Seems like they didn't take me seriously when I told them this was typical of his post anesthesia self and he proved me right by not having anymore issues and was a total rock star for the duration of his stay. I, however, was a wreck. I really don't like being in the hospital. I mean really really really don't like it. I've/we've served our time and now I hope we get a break (a very very very long break) from visits in the future.

We went back to the hotel and spend the next two days with my family eating, playing Wii and Sorry, and just really enjoying being together. We had an audiology appt and Miss A actually told us No has capabilities of hearing normally (if he does or not is a different story and that would make it a neurological issue) so that was a huge improvement from our last visit. Our Neonatal follow-up appt just told us that we are doing the right things to support No is this battle and he looks better than then last time they saw him. Yippee!

Did you expect anything less from my little hero? He is so amazing and we are lucky to have him in our lives. I find myself thanking God everyday for blessing me with such an incredible soul for a son. Who would have thought that I'd be trusted with such an important job? I certainly didn't.

And now you know the rest of the story. Good Day! (that one was for you Pops and in memory of Paul Harvey).

Quickie

So I know many of you are anxious to hear about what happened with surgery and appts. I'm exhausted so this is just a status update.

Surgery went well.

Stayed in the PICU that night.

Left next day.

Had appts next day.

They went well.

Loved seeing my family.

Didn't have enough time with them.

I really will do a real post later. Just want to gel for the night.

Thanks for the prayers and the positive thoughts you sent our way. Once again, it worked!!!