The big D

Disabled.

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.

I'm so excited and I just can't hide it!

*I realize some of you are reading just to check up on Nolen, so I will seperate my blog by headings so that you can skip to Nolen's updates if you like!*
 
The girls are going to be here, at my house around 3pm tomorrow! As crazy as it sounds, I am just so pumped to have all of my family, once again under the same roof! I feel like we've spent far to much time spread across the globe/map for my liking.

I am a bit nervous about the added work load of two little people who will be needing my attention. Not to mention that we will be kick starting our Home school year.

Homeschool
I've decided to go with Horizon's Math and I think we are going to try our hand at Explode the Code for phonics/early reading. It's cheap enough that if I don't see Kaelyn liking or responding well to the system that I won't sweat the investment and can try a different program. I had originally hoped to do Calvert School, but after talking it over with Ryan I don't really NEED all the assistance (but I really WANTED to be lazy and let someone else do all the work for me) that Calvert offers but just needed help in planning Math and teaching Reading. Also, Calvert school is a larger financial investment when I'm still not sure how Kaelyn would respond to it.

Our plans for the first week are to work out our daily schedule (I have a rough idea of what it should look like, but now that I'm adding in Nolen's extra care, therapy, and doctors appointments I'm going to have to adjust accordingly) and to establish a Morning routine of Calander time.

Our Calander Time:
-Say the Pledge


-Work on the Weather/Season: (weather for Anna, Season's for Kaelyn)
-Sing the Days of the Week song (for Anna, but also to help Kaelyn be able to tell me what today is, tomorrow will be, and yesterday was)
-Sing the Month's of the Year song (complete with a dance :) because that's just how you should start your day, by dancing!)
-Work on our monthly binder where Kaelyn traces the number of the day and colors the pattern.
For example, Today is September the 25. Kaelyn would trace the number 25, and color the square on her calander pink because our pattern is White-Pink-White-Pink. I'm also considering having her count up to the date (so 1-25) to help reinforce her concept of numbers.

Normally, at breakfast I tell the girls what we have planned for the day as well as read a poem/story from our children's Bible. I am considering making a weekly calander so that Kaelyn can SEE what we have to do that day and the rest of the week. In addition to that, I would also like to make a daily schedule with times (Breakfast, School, Lunch, Nap, Dinner, Bedtime), so that she can start telling me what's next by using the clock and the schedule together.

Nolen

We had our first meeting with Early Intervention    on Thursday of this week and Nolen qualifies. That's both a praise and a bit alarming. To qualify your child must be delayed by 25% in two or more areas or 33% in one. Nolen was evaluated at Newborn or less in most areas. I think we expected it to some extent, but it was still hard to hear from someone else's mouth that your once "on track/slightly advanced 6 weeker" has regressed to being "severely delayed". I also think it was a little bit harder for me because our Pediatrician had commented how it was very difficult for babies so young to get into the program unless it was extremely severe due to the variation in what is "normal" for this age. She had cautioned me that she thought Nolen needed some therapy but NOT to expect the state to let him in until he was older. It's a praise because we have heard amazing things about this program and the therapist in it! I'm very excited to start therapy and learn new techniques to help Nolen get back his strength quickly.

   We meet with our team to start setting goals for Nolen on the 5th of October and then we will start having therapy sessions regularly after that initial meeting. In the mean time, they have given us a few tips of things to do with Nolen. The first is to encourage as much movement as possible by playing music/talking to him/moving his arms and legs/bathtime/etc. In addition to that, they also suggested using one of the gel packs (yes, like the kind you put in your lunch) underneath his head to help him be able to keep looking forward while laid on his back. That will help his head go back to a normal shape as well as encourage those muscles to strengthen. They are concerned about his hearing since he doesn't react to noises well, but there isn't much we can do for that other than wait.

 Our pediatrician has also advised us to keep both the therapist through the state Early intervention program as well as the therapist through our insurance. (I won't lie, I was secretly hoping she would say, "Oh, you qualified for the state program that will come into your house and make your life much easier than having to drive all over NJ for therapy appointments with three small children, don't worry about the insurance approved therapy!". But she didn't.) So, this next week is going to be a busy one for Nolen, he has his first appointment with Speech Therapy through CHOPS and we start the process of getting him into physical therapy through CHOPS. CHOPS aka Children's Hospital of Philadelphia generally has a 2 year waiting list, but because we went through their hospital Nolen has somehow magically bypassed that waiting list and gotten in for Speech. I'm not sure yet if he will be able to get in with physical therapy, but the referral is already written and should I encounter a long wait list, I will happily find another suitable physical therapy company to work with! He will also be meeting with his feeding team, a GI Doctor and a couple of other additional individuals on Thursday.

A bit about the girls

My sweet darling ladies have been living the high life with their ReeRee (my mom who is not old enough to be a grandma) and Gramps will hopefully be returning to our house this Saturday!!! So exciting. But while they've been away I've been getting some sweet stories back from my family. I thought that I'd lighten the mood on here with some cute stories.

Kaelyn has been teaching Anna to count. Anna's been able to count to 5 by herself for awhile now, but apparently Kaelyn has been counting to 16 with her. This is HUGE because Kaelyn usually messes up 13,14,15 and has apparently gotten it!

My parents have been doing a wonderful job helping me out and watching the girls. Mom went and bought some blueberry yogurt drinks. After Anna had drank two in rapid succession, she looked at my Mom and asked for some more to which ReeRee said No. Mom went on about her day and noticed that Anna was being really quiet (and since my mom has raised 6 kids now she is well aware that this is NOT a good thing) and went to find her. Anna had gotten 3 more drinks, opened the tops and saw that they each has the foil closure. Instead of giving up, she figured out how to open the foil and proceeded to drink EVERY LAST DROP!

I've figured out what curriculum we are going to be using for Kaelyn (will post about that later) and am attempting to rough draft a schedule of our days.

Nolen is making very small improvements each day. In the mornings (3 am feed-noonish), Nolen nurses extremely well and usually averages a little over 2 ounces (we want him to be taking 3!), but as it gets closer to noon, he starts to take less and less orally (but almost always at least an ounce).  It's very frustrating to see him take so much and then drastically drop with each feed. It's a cycle of getting my hopes up and then getting them let down. Now that I can see the pattern (am feeds being consistently better than pm feeds), I know not to get too hopeful.
              Tuesday, we go for his Well Baby exam but no immunizations because the doctor wants to wait until he's been out of the hospital for a month. Let me just say that the Colonel who is his pediatrician has just BLOWN me away with her dedication. We requested her specifically for Nolen because she does such an amazing job with the girls (and fought so hard to have Anna's tongue clipped). I saw her last week and she spent 2 hours in the room getting to know Nolen, asking me about my concerns, informing me on how we can use New Jersey's Early intervention program but if Nolen doesn't qualify because he isn't delayed enough to approach her about it and she'd make sure we got the specialist we need!! She also made it possible for us to get an appointment this week (unlike civilian providers, the military clinic doesn't always have appointments open for you to take, I've had to wait a month or more for well baby and 2-4 days for a sick child appointment)!!!
              Wednesday evening the Home Care Nurse is coming to check his weight gain and vitals. Thursday evening the Speech Therapist and Physical Therapist are coming to evaluate Nolen and determine if he qualifies for early intervention or not. Friday evening Ryan is flying!

Living on Prayers, Pumpkin Spice coffee and little Patience

Before I had kids, staying up to 3 am with friends after school or work was my idea of an exciting night. I never expected 3 am to become exciting because my child had pulled his feeding tube COMPLETELY out...but alas, that is where I am today.

Now, I'm finding myself dreading 3 am and thinking often of when I will get my next pumpkin spice coffee fix. I am so glad to have Nolen at home, and so thankful for all your faithful prayers and petitions on our behalf. Thank you for your overwhelming support and love for our little family. With that said, little Nolen has certainly kept us on our toes!


The hospital had established an every 3 hour feeding schedule (3,6,9,12, rinse and repeat) , and I really liked the predictablilty of it so I have been trying to stick to it, but feeding Nolen is an ordeal in and of itself.

Feeding Nolen used to be so easy, get him, nurse, change him, go about my day!

Now it's much much much more complicated and can take anywhere from an 1 hr-1hr 45 mins. Here is the process:

Wake Nolen (if he isn't awake)

Weigh Nolen and note weight and time

Go into our room and nurse Nolen (I was letting him eat until he stopped, but the doctors equate an hour of nursing to running a marathon and reccomend from now on I only do 20 mins top of nursing)

Weigh Nolen and note the amount gained

Change Nolen and start to prep him for a feed
       -Check tube placement with PH paper by removing a small amount of stomach fluid through the tube
       -Flush the tube with sterile water
       -Prep his connecting tube with the amount of breastmilk needed to make the appropriate amount
       -Attach the tubes, start his feed.

Leave Nolen's room and go pump for atleast 10 minutes

Store milk, clean up pump supplies and go to Nolen's room

Remove the tubing from Nolen's feeding tube

Flush his NG tube and then flush the tubing that connects the NG tube and syringe with water because apparently breastmilk will build up in the tube and clog it. Insurance only allows one tube and one syringe for feeding per day, so we are having to wash and santize a lot of our items so tha they can be reused.

And then sleep the 1hr-1hr 30mins until the next feed!


I really have to hand it to families with children who require special needs, I had NO IDEA the level of care and work that went into taking care of a child with just one extra need, I can't imagine those who need around the clock care.

Signs you've been in a hospital for far too long

1.    You know where to find the good cereal and snacks in the nourishment room and are the go to parent for those inside tips

2.    You can recognize the "teams" of doctors by faces and know which level they work on and what their specialty is

3.    You recognize other parents in hallways, at the McDonald's (they give free coffee to patient's parents), and the elevator

4.    The clerk at the McDonald's knows your coffee and expects you around the same time each night

5.   You've perfected silencing the alarms while half asleep and verifying that your child was breathing and not flat lining.

6.   You can sleep sitting up in a chair, across two chairs, in a sleeping chair, on a  bench and half way in an isolette while you comfort your sick child and wake up feeling moderately rested because you've learned the nurses rotations and know what hours to sleep during to get your optimal number of zzzs.

8.    Cleaning staff asks how your child is doing on your way down to get food from the cafeteria.

The good news is that I shouldn't be adding to this list anymore...as long as Nolen can pass his car seat test and all of our appointments are lined up we should be able to leave sometime this evening!!

Begining to think I have a new full time job

I seriously am starting to feel a tad overwhelmed by the amount of people/appointments/extra care Nolen is going to require for awhile (and possible for a long time).

Sometime in the next day or so, I am learning how to put in an NG tube (for a video of what I will be doing, but on a baby not an adult), care for it, feed him using it, clean it, and remove it.

Arranging for a baby scale and pump to be rented and brought home to weigh Nolen after nursing him so that I can insure he gets the proper amount of breastmilk through his tube.

Arranging for Early Intervention (a great program that New Jersey offers to it's children where a home nurse evaluates your child and determines what therapies may be needed) to start making visits.

Follow up appointments with various doctors and therapists as needed. It's starting to look like I'll have plenty of appointments to keep myself busy with.

With that said, and as overwhelmed as I am...I am so ready to get out of this hospital. I have started recognizing other "blue band club members" as one of the fellow parents called us today as we were getting our complimentary coffee at the McDonald's in the food area for being parents of patients. A sure sign that it's time to be at home.

Breaking out the video camera

       So, here is somewhat funny story (perhaps I've been in a high stress tiny hospital room for far too long that I find this funny), Ryan and I had noticed Nolen alarming for low saturation levels often during the day (and no one responding, granted we were spoiled on the PICU where we had our own nurse, but these nurses are far less responsive than even the local hospitals peds nurses). So, when Ryan got tired of waiting on someone to respond, he went and got someone. They dismissed the alarm as Nolen's movements interfereing with the read (which can happen, but on day 10 of our hospital stay we are well versed in what is and isn't a good read). So, after Ryan voiced his frustration to me, I suggested that he video tape the next alarm because (as bad as this sounds) I was going to sleep.

     About thirty minutes later I wake to hearing Nolen alarm and start to cry and see my husband actually video taping the event. He then calls the nurses and shows them the video tape (yes, by this point I am hiding in disbelief). Low and behold, we end up having three nurses come in (one was Dawn from yesterday, our very pregnant-35 weeks with twins nurse, and one other lady I had never met). THEN to pacify my husband we ended up having a doctor come in. Long story short, Ryan has them marking the frequency of his desats to see if it's getting worse (which it is because in over two days, today is the first day we have had alarms for desats in addition to the other alarms we get).

I am sure we are the butt of the joke on the unit tonight with our videotaping of alarms, but if it gets Nolen attention then it's well worth it.

Other things that Ryan has said during our hospital stay that still make me smile
"If I was this incompetent at my job, I would have died by now" (regarding Nolen's diagnosis)
"If there was an alarm on an airplane you would be demanding attention too" (regarding his alarms)


**Tonight, the alarm system that alerts the nurses to alarms in a patients room is not working, so it looks like I'll be getting my exercise getting nurses**

One small step for man....

      It's been one small step at a time here in our little room on the regular Peds ward. Nolen's doing pretty good, but has had a few episodes of desats, high heart rates(these have been happening frequently) and high respiratory rates. The only concerning one of these is the high heart rates because that and his whimpers indicate that he is having some discomfort (from what I don't know, could be a lot of things, like the tube down his nose or one of his two ivs), but thankfully tylenol does a lot to manage his pain this time (unlike before where nothing touched it).   

     He has spit up his feeds once or twice but is managing to keep most of it down. Despite his few episodes of spiting up, they are going to try and keep on the same course with getting him weaned off the slow feeds & put on gravity pulled feeds. If he can handle gravity feeds then we might be coming home with a tube and still working towards getting back to nursing.

   The speech therapist came by today and Nolen has managed to nurse and get about an ounce before he tires out. Hopefully we'll keep trying to nurse and he'll be back up to his full feeds via nursing!!! He's been able to lose the hat and is down to one heavy blanket to keep his temperature up!

  There is talk of bringing in an occupational therapist and a physical therapist to see if there is anything we can do to assist him in regaining his strength. In some ways, it's like having a newborn all over again. I'm having to wake him to feed, reestablish a routine, reteach him how to hold his head up, rotate him so that his head isn't misshapen.

  The doctor spoke to us today, and he said that generally with the enterovirus there is no long lasting effects, but since Nolen's case was so severe that he couldn't say there wouldn't be anything residual or long lasting. Honestly, I think my little man will be just fine once he gets his feet back underneath him!

He smiles, I smile

     Talk about melting your heart! We now have a brand spanking new room...on the PEDIATRIC Ward. No more Intensive Care Unit for this guy!

     The doctors haven't dared give us a time line for going home, and we are looking at what I think is a minimum of two days to see if Nolen can handle feeds over short periods of time before we can lose the GI tube. They might send him home with the GI tube if he can't handle it, but want it to be an easier process for me (instead of having to stand and slowly feed for an hour, it would be much easier to feed for 20 mins). Currently, he has to remain an Eskimo to keep his temp up, and hopefully we can start seeing him warm himself w/o all the extra layers!

Nolen isn't awake or as active as he was or should be, nor is he crying as well as he should. So we have come a long way, and we have a long way to go.

Thank you guys so much for all the support, offers of help, prayers, well wishes and for petitioning others for prayers. I really have been very calm during this whole thing and a lot of it has to do with the fact that I know others are praying for our little one as well.

Praises:
 We are where we are, without oxygen and off the isolette warmer. He is handling  the bollus feeds for now.

Prayers:
My milk supply
Nolen can handle increased feedings
Nolen learns to warm himself
The girls continue to have a good time with family
A date to go home

This is the kind of crow I LOVE To eat!

So, remember my frustration yesterday, and I how I was so sure Nolen shouldn't be coming off his oxygen....


Look at what is missing?? Can you figure it out???

Yep! You got that right, Little Man is breathing on his own. He still has occasional desats, his respiratory rate can still be a little high, but he is working it out, learning how to keep breathing and keep his rates up! I guess part of me was scared to make him work for it, but he can do it! (He was suctioned a time or two last night to help keep his airway clear)

Nolen still has his feeding tube (the yellow/cream tube through his nose) and is being fed breast milk continuously to help his body regain it's strength. Today, we hope to move him off continual feeds onto bollus feeds (which is what a normal child does, a large feed, period of no food, large feed.

Nolen is maintaining his core body temperature without the help of the warmer on the isolette. With that said, he does look a bit like an eskimo with his clothes, socks, knitted hat, and three blankets.

Today, I will gladly eat my crow for breakfast! Just glad to see some forward movement from little man! Can't wait until they let us take that big step down out of the PICU and onto the regular ward.

**knocks on wood to avoid jinxing myself**

I'm going for a walk.

Yep, I am going for a walk before I become "that woman" or "that mom". Today, I am extremely frustrated and have lost the ability to filter and be nice (to doctors). We have no answers, and no indication of what to do or where to go. The doctors say that they think it's just an extreme presentation of  Enteroviral Spinal Meningitis, and that it will just take time for Nolen to improve.

And that is not what infurates me.

What frustrates me to no end (and led to that very emotional post earlier on here) is that I keep seeing the SAME cycle of Nolen's care. After posting that very emotional post and starting a journal to document his decline, the doctors at that hospital FINALLY saw what I saw, FINALLY witnessed his fall back to being listless and non-responsive. They got it, and sent me here. And now, once again these doctors just don't get it.

They are going to try and determine if it is the oxygen Nolen needs or the airflow by putting him on room air at 1/2 liter. A liter is the amount of air being pushed in, the oxygen% is the amount of that air being pushed in that is oxygen. So, they are taking away his oxygen and putting him on room air.

This has been tried once before when Nolen was alert and presenting well with occasional desats (Sunday Night). After about 7 hours of being on room air, Nolen began to desat more frequently. Prior to that he was holding his own at 97 pulse ox. Then instead of his average being at 97, it went to 94, and then it was frequent desats (a low pulse ox means low oxygen saturation in the blood) so that the nurse had to move him up to 50% oxygen at 1 liter. Even then he struggled to move up to 100 pulse ox. Then next day was spent weaning him down to 35% oxygen at 1 liter...and he's been there until we arrived at CHOPS where they dropped him down to 1/2 liter at 35% oxygen. It was at this time that Nolen became the WORST that he has been...because he was fighting so hard to breath properly, to keep his heart rate normal, to keep his body temp up. (The doctors at the 2nd hospital had also blamed his low body temp on him being exposed during testing until it lasted for more than 7 hours, they also blamed his increasing unresponsiveness on his tiredness from testing.)

Now, here we are again, with Nolen being EXTREMELY lethargic, not crying/moaning/making noises (other than gasping) with more signs of resperatory issues (high respiratory rates, high heart rates and even more low heartrates) trying it again because you think he needs the stimulation of airflow and NOT the oxygen, which is what the doctor at the previous hospital thought and was proved WRONG! SERIOUSLY!?!?!?! Do we have to repeat what we've already ruled out as a possibility?

You are telling me that my son is tired from fighting this virus, that there is nothing you can do to help him other than to treat the symptoms and provide supportive care. That he just needs time. So what do you do? You take away his breathing support?

**Yes, I understand that if you flood the body with oxygen it is actually counterproductive because oxygen causes the veins of your body to constrict, thus restricting blood flow and interfering with the bodies ability to properly oxygenate. Oxygen supplementation requires a precarious balance of the appropriate amount at the right rate. I also know that at some point he is going to be off the support altogether and I would love for that to be today, but given his somewhat rough night and his continued lack of responsiveness due to "sedation for his MRI" you try it anyways**

I think that other than not having answers...which is a  frustration I can totally cope with. I find myself being unable to cope with watching the same things be done or said to excuse away his behaviors. For example, today his decrease in responsiveness from yesterday is being blamed on his sedation...whereas, before we landed here his decrease in responsiveness was being blamed on the procedures preformed the day before until it was SO BAD that we were transferred. Or, trying to wean him off the oxygen all together and failing (happened at both hospitals), or trying to just do increased stimulation with room air (which has been done at both hospitals).

Instead of repeating what others have done and failed to do successfully, lets try something new!

**never got my walk, vented via blog instead and now speech therapy is here to try and get Nolen to latch and nurse...wish us luck!**

Don't Wanna

My sweet and darling child Anna has a favortie phrase and it's "Don't Wanna". She uses it for everything...."Don't wanna go to bed, Mommy", "Don't wanna time out", "Don't wanna nap"....and although some might find this very cute, I find it rather annoying. But part of me wants to channel Anna and just say I "don't wanna".
I don't wanna be here. I don't wanna sick child. I really just don't wanna.

But here I am. I do have a sick child. I am doing my best to ‎'be joyful in hope, patient in affliction, faithful in prayer' Romans 12:12, despite the overwhelming desire to do my best impression of Anna!

A few things about Nolen and when I describe him. When I say Nolen was more active this morning (he has since started declining back to being more unresponsive), you really need to understand our definition of active
-he opened both his eyes fully (not half lidded and not with his eyes rolled back)
-he moved his arms and lifted them (not just letting them lay)
-he had noticeable reflexes that were absent yesterday
-he made his facial expressions to give the impression of pain or discomfort
-he "cried" which means he whimpered, sighed deeply and made tiny noises
-he responded to stimulus (painful procedures or uncomfortable ones were reacted to somewhat by him opening his eyes, making small noises and grimaces)
-he sucked on his passy (despite having not been fed for over 24 hours, Nolen was not interested in sucking period until this morning when he exhibitied some desire to suck/eat)

Nolen is taking a very small amount of milk over an extended period of time through a tube in his nose. Hopefully this will bring him back to his "active" state of this morning. He is still unable to cry as you would expect a baby to, remain awake for extended periods of time (5 mins or more), fight doctors, have strong reflexes and kick his feet.

Right now, to hear a strong cry from my son would be music to my ears.

Results are in---No News is Good News?

Results are back, EEG, MRI, and Cultures are all normal. No indication of Encephalitis, seizure like activity, or malformations in the brain, no indication of bacterial infection. Back to the drawing board to come up with some other solutions to explain Nolen's worsening condition. Can't comment on how he is doing given the fact that he's been sedated and hasn't recovered from that either. His feeding tube is in place and they are starting feeds tonight, hopeful that that will encourage him to move/awake.

Move to CHOPS

Sorry, for leaving those of you who I don't know in person and aren't on my Facebook list in the dark..

Nolen with his Electrodes attached under his sock cap

Yesterday morning (Tuesday the 7th), we (the nurses and I) mentioned to the pediatrician intensivist that Nolen had been sleeping through feeds, and upon the doctors examination she became very concerned like we were about his "floppiness" and his desats (which were remidied at that time by sholder rolls, which are blankets rolled and placed under the sholder making it easier for the airway to stay open and not weighted down or closed by his now "heavy head"). The doctor mentioned that she suspected Encephalitus (related to Meningitis) and wanted various tests ordered. One of those tests was an EEG, but they didn't have a technician available and due to his worsening condition they had us transferred to Children's Hospital of Pennsylvania.

Once here, they immediately put us back under "isolation conditions" which mean the doctors enter the room in really snazzy masks, gloves and aprons to protect themselves and other patients from potential germs Nolen might be creating. After what felt like an endless stream of doctors, questions, exams, and telling of our story, they decided to do a Video EEG overnight (which is much longer than the normal EEG of 4 hours).  Ryan arrived, and since Nolen isn't being fed (he's on maintenance fluids to keep levels up), I left for a quick moments of rest and to take care of a few things at the house for the girls (who are with family). The room here only has one bench-suppose-to-be-bed that only one person can fit despite my very slim size, so we will probably be looking into the Ronald McDonald house which is only about a mile down the road since our home is a little ways away.

Unlike the other hospitals, meals are not included for parents, so Ryan and I will probably end up taking breaks at the Ronald McDonald house and bringing meals back during "shift change". We really don't have anything new to report.

Tests w/results (these were run at the other hospital)
-second 24 hour culture clear
-Blood work, Urine,
-First and Second Cranial Ultrasound Clear


Results due today:
Second 48 hour culture
Video EEG

Tests being run today:
MRI
but we may add more

Daddy reading Dr. Dolittle to Nolen. It was our bedtime book while he was away and the girls seemed to enjoy it. Whenever he was awake at Virtua I'd read and he seemed to enjoy it.

7 Sept Morning Update: There is an A and then there is an A

I don't know about you guys, but I am a dork. I am. I was that kid, the one blowing the curve, the one who thought that not all A's are created equal...and you know what Nolen buddy, I still think that not all A's are created equal. I want you at 97-100 Pulse Ox at all times...I don't want just any A, I want an A+.

Before his temperature drop when he was still cooling down from a fever

We are waiting on the doctor, so there aren't any new ideas about what could be causing this, and in some ways I'm secretly praying for a positive culture so that I can KNOW what's wrong and where to go next with this. Watching your child fight the unknown is not fun....fighting the known is only better because you can measure progress, treat symptoms and learn how to help.

They are trying to wean him off his Oxygen (but it does NOT look likely, thirty minutes into being down at 35% and he's already dropping to the low 90s). My sister suggested that I keep a journal of his levels for a day or more to see if I can "capture" the pattern I'm seeing happen repeatedly but the nurses and doctors keep brushing off (with good reason, they don't see it because they don't make any type of note of a O2 level less than 100, whereas I know the numbers, I watch his average drop from being the high 90s, to the mid 90s, to the low 90s and then bottom at the 80s/70s). She thinks if I can catch the pattern on paper, perhaps they will be more willing to consider that there is a pattern at all. So here I go with my excell spreadsheet...every thirty mins...now that I know what to do, I'm doing it and feel so much better.

Nolen's experienced another "personality" change he has returned to the severity of lethargy/floppiness/unresponsiveness that initiated his move to the PICU. He isn't waking to eat, so we are doing bottle feeds. He has good feeds (4 oz of breast milk) but he is experiencing shorter and shorter wake times following feeds. Here is a picture of my sweet man, enjoy

He is warming up very slowly.

This is what torture feels like.

Update: Nolen's on 40% oxygen, he seems to be holding his own for now, but I'm starting to notice him slowly losing his high levels for lower 90s. All his initial labs are good, we are now waiting for another 48 hour period for the Spinal Fluid cultures to rule out bacterial meningitis.

Edited update: Nolen is still not waking to eat, he is in a very deep sleep so his fluids have been increased and the nurse wanted to see how he would do using a bottle with breastmilk. I am SOO excited about this. I can pump and will pump like a champ just to keep it where he can have frequent little feedings and get some of those yummy antibodies and lots of calories!

If you wish to keep viewing me as some strong amazing woman...don't read any farther...but I am tired of being strong.


              This has got to be what it feels like to be tortured. I have sat and watched and comforted and nursed and talked to this sweet baby child of mine for what feels like a very long and endless day. I have learned the patterns of his illness, I can see the downs coming from a mile away...I can almost predict them...and as much as I can scream it out loud, shout it out to whoever will hear...I have to sit and wait until he gets far enough down for them to push him back up. At the beginning of this very long day, I could hold him and comfort him and know that it was working...I could see his numbers go up, I could feel his breath slow, his heart ease and his body relax against mine and know that I WAS DOING SOMETHING, but now I sit here and just watch knowing that not even my touch is helping. God, how you must have felt with your son on the cross...binding your own hands and letting it happen, watching it happen, and not being able to do anything because of your love for use. I feel like all we are doing is buying time until something extreme has to happen...and I really would rather skip the buying time part and DO SOMETHING that is going to stop this very slow very cruel decent.

Nolen is exhausted. He was poked and prodded and examined today. He's had a spinal tap, a cathater, multiple sticks to get minute amounts of blood and he's spent. His core temp is low, he isn't waking to eat, he isn't eating, he isn't opening his eyes when I talk to him, he hasn't even attempted a half smile. He just lays, and lays and lays as his O2 levels drop slowly to a level where they end up upping the oxygen, and his lack of interest in eating leads to fluids being upped, and his body temperature has led to him needing a hat and socks and clothes and multiple blankets to keep warm when before we were stripping him down naked. His heart rate has dropped a couple of times today, his breathing has stopped for extended periods of time today, he has desated many times today.

There are no answers, no explanations and I have to keep telling myself to wait it out, to wait it out...but I am Oh so tired of waiting. I want to take his pain/discomfort/fatigue away. Put it on me, let me carry this burden for him, and I can't. I want to ease his pain/discomfort/fatigue...if it means that I sit stationary for another two days in the same spot and only get up to pee twice...I will sit...forever and never get up and just stink. Instead of people asking me what they can do...I wish someone would tell me what I CAN DO, because I just don't know anymore. Someone please tell me what to do.

The highlight of my day was the moments I spent reading to him, and watching his eyes flutter open momentarily, seeing the glimpse of baby blues and knowing that he somewhat aware of me. Of that moment when, after getting his hair washed from his brain ultrasound, he turned and he looked at me...he found my voice and he found me. I just want to reach out to him, heal him, comfort him, love him, hold him, assure him...

I am doing all I can, I just wish it was enough.

Updated at 1 am: I am doing much better  now, I went and ate a delicious meal while listening/singing worship songs to Nolen. Once I calmed down and found myself less frustrated with everything, I fell fast asleep while sitting up and finally woke feeling pretty refreshed! Thank you for bearing with me.

PICU Update

Right now he is on a very low level of Oxygen and it's more flow to stimulate his reflex to breathe. That said he's maintaining his oxygen levels around 97 (when during his episode here he had started to drop down to the low 80s with more frequency and shorter periods of recovery). Thankfully, the oxygen was given quickly enough that he hasn't presented as ill/listless/severe as he was prior to being placed at this hospital. Right now, we are waiting to see what the doctor wants to do, but I for see them preforming a Pneumogram (which is what was started when Nolen became so severe they had to remove the probe from his esophagus to move him to the this hospital). We aren't sure when, since he's needing the o2 to keep his levels up and being on oxygen might interfere with accurate results. He is definitely baffling a lot of people (the doctors and nurses included). I should know more as soon as the doc gets in.

**Since I started writing this, he had an episode while nurse was present and needed to be upped to 50%**

In the PICU

Nolen has turned for the worse. We have transferred hospitals, he is experiencing frequent drops in his Oxygen levels. The cause has yet to be determined. Ryan is being brought home just in case this turns for the worse. Currently, the doctors here are trying to allow another episode to occur (by removing oxygen) and evaluate our course of action after that happens.

Thanks for the prayers.
Sorry so brief.

Good News!

A HUGE PRAISE- It is Viral Spinal Meningitis. Which means that the antibiotics can stop, Kaelyn and Anna (as well as my friends children) are safe and we ideally  would be out of her today. With that said...we are still here.
Nolen started vomiting last night and has continued throughout today as well as having developed diarrhea. They had him on fluids to prevent dehydration, but have since stopped them to see how he is doing on breastmilk alone since his vomiting has slowed (and hopefully stopped). We are hoping we get discharged early tomorrow morning so that my sister can make her plane and the girls can stay here with me!

Praises-
A diagnosis
Slowed vomiting
No IV

Prayer Request-
Dismissal tomorrow
No more vomitting
Increased Appetite
No fever
Safe travels for my sister

Thank you all so much for your prayers...I really feel like knowing so many were/are praying or sending positive thoughts our way helped me to find peace and comfort and not be fearful of what could have happened.

Waiting...not so patiently

First off, Thank you all so much for your prayers and concerns for our little one and for my family. Nolen had been having a really rough night/morning but around 4 pm this afternoon he started taking a turn for the better!
I am finally able to let him lay and rest in his crib because he is feeling much more comfortable.

Thanks in large part to your prayers, tylenol and excellent care Nolen has gone from needing these kind of precautions with visitors

Dena's protective  gear to prevent her from getting exposure to what could be Bacterial Meningitis

To needing NONE!

From being so sick that the only comfort to be had was in my arms

His IV is on the right, which is why his arms appear stiff

To being able to lay in his crib and watch the mobile while I pump to rebuild my milk supply from his slow nursing.

With only his big sister Kaelyn's cat to keep him company while he sleeps.

We are still waiting (not so patiently) on the results of this last culture. If it is clean and he doesn't continue to vomit (a new development that we are hoping is only a random incident) and his heartrate, respiratory rate, and blood pressure (which have all been high off and on) start to level out, and his fever and pain are managed by tylenol...we may be going home late tomorrow.....but those are a LOT of If's and all I really want is to know that he is well and isn't in anymore pain.

Update on Nolen

So, I just heard back from the doctor. The initial culture shows NO GROWTH!!!! Which is a great indicator that this is just Viral Meningitis....which is a 100 times better than Bacterial. We won't have a 100% diagnosis until after the 2nd culture has been evaluated. From what I've been told, the second culture (48hr) is more of a precautionary measure to insure that some crazy bacteria isn't the cause as well as to take into account that there could have been very small amounts of the bacteria present due to catching it so early.

We are breathing easier...that is for sure! My sister made it safely into town and will be watching Nolen for an hour while I shower and visit with the girls. Then, she will be taking over the babysitting duties for my girls while I spend the rest of the time in the hospital with Nolen.

Nolen has been in a lot of pain (as evidenced by his high heart rate and high blood pressure readings as well as his crying/whimpering during sleep), and is very restless. Currently, the only way we have been able to keep his heart rate down near normal is through keeping skin contact (kind of like Kangaroo care) and moving him as little as possible (which means Mama isn't doing much). He is nursing more like his old self (Praise God) but not as frequently as I would like.

Anna is still running a slight fever, but other than sleeping A LOT she is acting just like her old self!

Current Prayer Requests/needs:
-48 hour culture comes back CLEAN
-Nolen's pain lessens and he is able to rest and Nurse more frequently
-Nolen's fever starts to subside
-Strength for Ryan and I.
-Guidance for Dena, my sister, as she is in a strange state (with wonky driving laws...but that's another post altogether) and a strange house where she doesn't know where anything is.

Prayers for Nolen

So, I apologize if this is a bit jumbled or brief, but whether you pray or you just want to send positive thoughts please send them this way!

This morning at 1 am, I noticed Nolen had been a little bit more difficult to settle down and kind of fussy...so when I went to nurse him I noticed how hot he was. I took his temp and found it to be borderline at 100.7. Knowing that Anna had been sick the entire day and running a fever I knew it was probably a virus and debated rather I should bring him in or not. I called the on-call doc and the doc suggested I bring him in. The hospital confirms that Anna does have a virus but that due to his age Nolen would need to undergo a Spinal Tap, Blood Work, Catheter for urine samples, and observation to verify that there wasn't another source of infection. Even then, they might still admit him for observation and antibiotics as a proactive measure.

A good friend comes and picks the girls up, leaves me in the ER with just Nolen around 4 am. Nolen's labs come back and he does in fact have Spinal meningitis. We won't know until sometime tomorrow if it is bacterial or viral. We want it to be a viral infection and hope that Nolen starts to feel better (he's very restless and fussy) over our 48 hour stay here. If it is Bacterial than this will become a whole different ballgame.

Specific Prayer Request
-A Clean Culture showing that it is Viral Meningitis
-Anna and the girls and my friends Children remain well
-Rest for Nolen, ease of his fever and discomfort
-Peace for Ryan since I know this must be very difficult not being able to touch and comfort his very sick child
-Strength to hold it together for me
-Safe travels for my sister who is coming up tomorrow morning to help with the girls and take care of the house if this does end up being bacterial meningitus.

Thanks for your prayers/well wishes.