Thursday, September 30, 2010

The big D


Yes, I said it. That's the title that Nolen is finally wearing. While I don't want this for my child, it does allow us to hopefully get the coverage for the Nutritionist that we need, and will also open other doors for future care. We don't know if it's a permanent disability, or if it's something he could essentially "grow out of" or "recover from", but his severe delay in development, his complicated issues with eating, and his severe loss of muscle tone in his entire body has made the label inevitable.

 My son is currently disabled.

  While yesterday was spent fighting for coverage with our insurance, I'd consider today was our first real adventure into what I call the "real world of having a sick/delayed/disabled" child. Spent the entire morning at one doctors appointment with our Feeding team. The feeding team consists of a GI Doctor, Pediatrician, Speech Therapist, Nutritionist (which our insurance doesn't cover), and an Occupational/Physical Therapist. All rolled up into one nice Loooonnnggg appointment. Thankfully, Ryan was there to help with the ladies while I focused on our little man. They were happy with our progress but *insert dramatic pause* he was going to be  needing to keep the tube for much longer.
           Nolen had been doing REALLY well and having more good days where he took most of his feeds orally, and less bad days were more than 50% was through the tube. I think my heart broke (as well as my spirit momentarily) when the Nutritionist announced that he was now going to be requiring 115 MLs per feed/8x a day!!! She literally took her pen and popped that happy little bubble floating above my hopeful head. Nolen will literally be needing supplementation with EVERY feed, and over half of his nutrition will be through the tube. It's like starting back at square one for the THIRD TIME (the first being birth, where you work your butt off to get them to nurse well). Did I mention that I have to pay a crazy amount for this bubble popping specialist??
          Occupational Therapist gave us some exercises to do with our little man (about twice a day) and I will now be trying to work those in with the girls schedules. Speech Therapy got to witness Nolen "peter out" during a feed...why he can't show them how he is at his best I will never know. We will be seeing our feed team once a month now. They discussed doing one "big" feed to make up the difference between his end total and end goal, but since he would need such a large amount that isn't a viable option.

I know some of you have asked these questions in person, but I figure there are those of you out in cyber land who have the same ones so I'll try and answer them the best I can....

Why can't you just bottle feed? It's easier than breast feeding. Yes, bottle feeding is easier, and yes, you can use fast flow nipples BUT Nolen's issue isn't necessarily being a poor sucker, his issue is that he fatigues quickly. He fatigues so quickly that even with a bottle he doesn't get the right amount in the specified time frame that the doctors have set. They want him to spend no more than 20 minutes (I allow 30) working for his food. A bottle can sometimes take only 20 mins and give him a full feed, just like the breast will sometimes work for a full feed in 20 mins. BUT usually he would tucker out and STILL need supplementation. So there is not much if any of a difference in a bottle vs breast.  Also, I breastfeed because it is easy, convienant and quicker for me to do than bottle feeding (not to mention cheaper). Putting breastmilk in a bottle and then giving it to my child only to have to  pump later isn't easier and just seems illogical.

Why not supplement using formula? Or just formula feed? Good question, I usually only breastfeed for about 3 months, and I've never exclusively breastfed until Nolen. I am so not a La Leche League, extended breastfeeding, breast is best type mom (although I'm not knocking those of you who are, I'm just not that dedicated).  Nolen is having some gut issues due to the strong and intense round of antibiotics he was on. The dietitian/pediatrician/GI doc all feel that since probiotics (good bacteria found in your gut) are naturally in breastmilk as well as other protiens/compounds/whatchamacallits that encourage the growth of probiotics in your gut, that I should continue breastfeeding as long as possible. I'm not generally susceptible to the push to exclusively breastfeed, but in this case it prevents Nolen from having to have additional procedures/medicines/vitamins.

       With that said, Nolen pulled his tube out this morning before our appointment, and we are going to try a few things. He is having some skin issues due to the tape, so we are going to let him have a day off.  One last day to look normal and "play" normal before we all accept that he has now been disabled. Sometimes it's good to play pretend. Today, we are going to weigh him at the start and finish of a 24 hour period without supplementing through the tube and try to supplement him using a bottle. We haven't tried supplementing using a bottle after a feed yet, but we will see how it goes. I don't think it's going to go too well since he's usually fast asleep and uninterested in sucking at the end of a feed but he's made me eat crow before! If he doesn't take the supplementation through the bottle, I will try doing a small feed (the amount needed) in between his two feeds, that way the end amount at the end of 24 hours is the same.

Now, I'm off to fight with my insurance company again...hopefully our new status as disabled will allow them to cover the services he needs.


Kim said...

Well, at least you can get help now, but I'm so sorry about the label. Think how hard this little man has fought to be here since the very beginning though... I bet he'll get past this. Good luck to you all.

Jennifer said...

First of all- don't let anyone make you feel like you have to explain your choices- you are his mother and you know what is best for YOU and YOUR child! I got a lot of criticism when Zoe was at CHOP because I stopped breastfeeding. They knocked her out for three days and when she finally came to, I wasn't there and still only producing colostrum, so they gave her what I had pumped and then had to give her formula. It created a nightmare and I couldn't get her to take the breast anymore and I was already weary with all the extra stuff I had to do that I didn't want to fight that battle. I pumped and fed her breastmilk through a bottle until my milk finally ran out ( after about a month) and then switched to formula. With my first child, I breastfed for 4 months. I cannot tell you how many people gave me crap about bottle feeding Zoe... but it was what I could mentally and physically handle at the time and that is all that mattered.
Secondly- I hope his diagnosis does give you greater access to care for him. We use the USFHP option and after about a month, they assigned us a case worker that was a nurse specifically as a liaison to help me navigate through all the paperwork, referrals and pre-authorizations ( CHOP was out of network at the time, but has since moved in-network). Perhaps Tricare has something like this.. I would call their customer service line and ask if they have something like this since USFHP and Tricare are supposed to offer the same services. Just a thought.