A new phase

So we’ve entered a new phase of our lives, River and the family are slowly adjusting. I am slowly adjusting too. At first there was definitely expected upheaval and tears! River is getting to know Patty and actually things are going pretty well. Her appointments have definetly suffered in frequency, PT is about once a month, and feeding therapy will resume this week at about twice a month. Recently she had follow-ups with both Dr. Morris (Neurosurgeon) and Dr. Pickens(GI). First off kudos to Daddy who had to do both of these appointments by Himself!! I was away for 4 days(longest I’ve ever been away from both the kids, mostly River) on a school field trip to Mt. Rainier (I’m in a geology class).

River's understands now what cameras are for!

Dr. Morris: River’s scar recently has “acted up”, not oozing, but swelling and looking gnarly red near the lowest part of the incision. Dr. Morris assured in his most mundane and unexcitable manner that it was stitches working their way out and that maybe we could apply a little bacitracin, but not to be overly concerned. And other than that the appointment was uneventful (from what I heard second hand).

Dr. Pickens and the GI clinic: This turned out to be a very lengthy appointment for Pete and the kids, but he wanted, and so did Dr. P, to be very thorough. We really want to get River off of night feeds. We have, prior to this appointment, feeding her nearly 500 ml at night, and only getting about 600 ml down her during the day. During the day it was blenderized diet(BD), and at night it was a mixture of milk and Organic Pediasmart. The highlights of the appointment were that River is growing great! She’s hovering around the 50th percentile still for weight, which is consistent and they are not concerned about calories. She weighs about 24.25lbs!! And our backs can tell. Pete and the dietician and Dr. P worked out a plan to bump up the daily feelings and Dr. P wants us to give them so her way slower than we have been, he explained that the way we were giving the syringe feeds were much too fast and were actually slowing down her digestion which would explain why it seemed she couldnt hold as much as she should logically be able too. Instead of two 70ml syringes (which we now use the Toomey syringe and it’s way better!) an hour it’ll be three 70ml (or roughly 200ml) an hour and it’ll take 45 minutes to slowly inject them. And do that 4 times a day. It seems like a huge giant change right? It is!! It is really time consuming and has been pretty difficult on all of us. The flip side of that though is that she is getting real food. To make it simpler on everyone we would stick her on a formula and a pump four times a day, in a backpack attached to her. Which is what most people do.

We are torn as to what to ultimately do since this is a huge commitment. We may think of getting a new pump and backpack for her and doing a 50/50 version so as to make it a little easier. The blenderized diet is thick and heavy and doesn’t move through a pump unless really thinned down, then it’s more like a homemade formula and you aren’t getting the benefits of having thick heavy food in your stomach. The thicker it is, the more it actually stays down, and helps with vomiting. We are super reluctant to give her more thinned-down blends. But spending 3 broken up hours a day on pushing a syringe and trying to get a toddler to hold still is pretty challenging as you might imagine. The good news is that 200 ml in an hour, going super slow, seems to be working so far. There has been no increase in vomiting because of it. And now her night feeds, on a good day, are down to about 330ml. And we are hoping to keep up the trend. In 2 months we need to check in with Dr. P and if there is not enough progress he may want to give her more gastric testing (we definitely don’t want this).

Physical therapy this week was a check-up with Jean, and while River’s skills have certainly improved, she is still not walking. And she was extremely uncooperative with us that morning, acting like a typical toddler and giving lots of attitude and independence. We will check in with Jean in another month. Feeding therapy this week, after a short hiatus, with Jennifer was another story. It went fantastic! River was actually interested in the food (of course I fed her less to get her hungry) she cooperated as much as a toddler can, and she discovered a sippy cup(Zo-Li) that she totally loved and drank an ounce from. We were quite encouraged. And of course Mommy went home and ordered a Zo-Li sippy cup off of Amazon.

As far as River’s adjusting to the new life of College Mom, it’s turned out well! Once the initial outrage of me walking out the door or whatnot has passed, she quickly settles down with her surroundings, she’s become more comfortable with Patty, and even Patty’s car. She appears to be connecting well with her new “family members”! With our new hectic schedules and busier lifestyle, this certainly helps to alleviate my emotions!

And She’s Home…

River is home!!!

Chillin' with her bro waiting to get discharged!

Surgery Day 3 had a rocky start to it, a lot of pain management issues, but once under control things went flying! Daddy was with her most of the day and said that all the doctors were pleased with her status and recovery. A physical therapist came by and ran River through some “drills” and was happy with the results.

Doing some PT

The one bummer is that either the medication or the surgery itself is making her digestion slow and/or nauseated. She is vomiting a lot again, and we’ve had to slow her feeds way down. Thanks to the Vitamix the food is actually going through the Joey Pump! First time we’ve tried it out, but it’s helping with feeding her. She will basically be on the pump all day long in order to get enough fuel down her. She was up a lot last night throwing up much to our dismay. Hopefully as we need to give her less pain meds maybe this will get better? I sure hope so.

So far today has been pretty good, she chilled with us on the couch and looked at vacation photos. She is taking a nice little nap and her brother is at his 2nd day of kindergarten!

And here is one of our Vancouver vacation photos from last week!

Framed Family photo at Capilano Suspension Bridge North Vancouver, BC

Surgery Post-Op Day 2 and Photos

I wanted to add some photos, but WordPress was giving me a hard time yesterday, so here are a few pictures from yesterday!

Here we are after having to give her a Betadine bath, and getting her hospital band and her assessments done.

Pre-Op, getting ready to go back
Post-Op Day 1, prone position and sedated

Here is River about an hour after surgery, being closely watched over by Elmo and Spongebob.

Day 2: I only achieved 4-5 hours of “hospital” sleep last night. River kicked around a bunch and tried to turn herself over. There was even a point (a frustrating point) were apparently she even somehow disconnected herself from her fentanyl line, her pain drugs, for who knows how long! And it was apparent that she was feeling discomfort during that time. But since then she’s been well controlled and very comfortable. The doctor this morning approved laying on her sides, and River seems much happier with that. This morning she watched a little toons, and played with her Elmo, Spongebob, Tag Puppy, and ball, and pulled and chewed on her vital leads! You may notice she is quite swollen. Fairly common after surgery, plus they are keeping her “butt above heart”, which will also push fluids towards her upper body. She has run a fever all morning as well, but it seems to be going down.

Early morning on Day 2, looking very puffy
Playing with her "accessories". Hard to tell but she is actually laying on her side.

I was able to start feeding her regular diet starting this morning. She even got a night feed, I used what they had on hand, milk and Pediasure. I also whipped up some baby food for her with some Gerber products they also had in order to start some real food going into her tummy. Daddy will be coming by later with actual blended diet, mixed up in our new Vitamix!!! This is the first time we’ve actually had real control over her food in the hospital. And yes, we have finally received our donated Vitamix, thanks to the Vitamix Company!! They generously supply tubie families with real medical and financial need their fabulous blenders, all you have to do is contact the company and fill out the application!

Wetting her mouth on a sponge

River, this afternoon, has been given the go ahead to be moved a little more, held, and transferred to the regular pediatric ward instead of ICU. Which are all good signs that they are satisfied with her condition. We should be moving downstairs very shortly.

Tethered Cord Surgery Post-Op Day 1

River’s tethered cord surgery today, August 30 2011, was a success. We are not out of the woods yet as far as a quick and smooth recovery, but we are very optimistic!

Currently River is resting comfortably, under sedation as necessary to keep her body still and in a prone(face down) position. She was moved to the PICU and is expected to be here for 24 hours. They want her sedated and prone for 24 straight hours. This is harder than it sounds. She’s already tried to flip herself over and me and Susan, her PICU nurse (who we met back during River’s heart surgery), had to force her back. Even sedated, my little girl’s strong will, and muscles, are tough to contend with.

Dr. Morris was her neurosurgeon, and he is still in charge of River’s care while she is here. He was pleased with the surgery, in his words “it went great”, even if he is a bit short in his explanations. Even though his personality is a little lackluster, as long as his works proves itself to be a success and my sweet baby’s spinal cord is all fixed up, then I don’t mind so much.

Arriving today, I have to admit, was not fun. I feel like I am just being put through a familiar ringer. Here we go again. Same ol’ hospital. Same ol’ same ol’. Yes we know where the cafeteria is, Yes, Thank You, Yes sign this, sign that. At least I feel River gets the care she needs here. Mary Bridge is a small children’s hospital, but it has done good by us. River is alive and thriving. She is destined for greatness. And we will always be grateful for the care she has received here. And it’s actually nice to run into a few familiar caregivers, we have already seen a few! But the familiar monitor beeps are not making me happy. They spike my blood pressure even though logically I know that River is fine. Shut up stupid beeps. Hello salad bar and Tully’s coffee. Hello bed/chair.

We love you River, my sweet. Be healthy and let’s get home soon!


			

Genetics & Surgery scheduled

Just a quick note today:

Recently we had a genetics clinic for River. We met with a geneticist from Seattle Children’s, Dr. H, and she did a quick exam and an extensive medical history on River and her lineage. River has already had several “arrays” done, which are genetic blood tests to look for certain markers. One was the amniocentesis in utero. The other was a more detailed version of that, after she was born. Both came back negative for any commonly known genetic deletions or mutations. Dr. H let me know of several other genetic diseases that have some of the defects River has, but she was also missing other factors that should be present with those diseases. When it came down to it, I chose not to do any further testing. The doctor agreed that most likely we wouldn’t find anything, since her searches for likely disorders didn’t scream “River”. So, in conclusion, she said we should take River to an ophthamolgist. There was only one disorder that might seem likely, but that would also present a problem with her eyes. So one of these days we will trudge off to ophthalmology. But overall we are not worried about any genetic diseases at this point.

The other:

Surgery is scheduled for August 30th. We will just be returning from one last summer vacation, and our week will begin with Ewan’s kindergarten meetings, then off to the hospital, then back for Ewan to start school that same week. Crazy crazy. River will be expected to stay in the hospital a minimum of three days. Hopefully by the weekend she will be back home. Another battle scar, another victory we pray.

Tethered cord diagnosis

After a very long wait, and a lot of run around, and almost having a very important piece of River’s condition fall through the cracks of busy doctor’s offices, we finally have a diagnosis. One part of me is very very angry that this wasn’t diagnosed sooner. The other part of me had held out hope that she didn’t even have Tethered Cord Syndrome, and I let the delays slide.

I arrived at the neurosurgeon’s office yesterday, without preparing myself properly. I wasn’t prepared for this answer, or the discussion of surgery. I think that someone in one of these busy doctor’s offices had assumed that I knew when they scheduled this appointment for us. I had even told my husband to save his off time and stay at work. I think I just didn’t truly believe she had it. Especially since even after the MRI back in April nothing urgent had ever happened. No one, not even her pediatrician seemed concerned. The radiologists had said it was inconclusive. The first neurosurgeon never even got back to our pediatrician. Finally this is the 2nd neurosurgeon and he definitely says it’s a tethered cord. I believe it’s the type of tethered cord called tight filum terminale.

For a very detailed and yet easy to understand explanation of tethered cord syndrome I found this other mom’s blog post, whose daughter age 7 suffers from the syndrome, and didn’t receive surgery until this year. Most time when diagnosed in babies they do the surgery early, usually between 6-12 months. For a very good reason, you want to prevent the actual “syndrome” from taking hold and causing ill-effects.  http://roadtosanmichele.blogspot.com/2011/01/tethered-cord-explained.html

source: http://en.wikipedia.org/wiki/Filum_terminale

3: Conus Medullaris, the base of the spinal cord. River’s sits lower, between L2-L3, this picture shows it sitting in the average location, near L1

The filum terminale is labeled 4, and in River’s case it is considered thickened, and holding onto the conus, when the conus should be free floating.

Dr. M, the neurosurgeon, told us that in River’s case her tethered cord is in the relatively “easy” end of tethered cords. It’s a simple surgery (relatively) and usually proves the least problematic and the least likely to grow back. This is the good news. The bad news: more surgery. River is due to have this surgery soon, I requested the first week of September. 3 days in the hospital, and a lot of sedation. I’m sad, sullen, and scared. But….But of course she needs it. And thankfully she needs it in a time where it can be fixed before causing her physical problems. After reading the blog, from the above link, and peering into the lives of a family affected by tethered cord, undiagnosed until age 7, I am even more acutely aware of how important this surgery is, and I am grateful that we are getting it repaired.

Chillin' on a hot day

Inconclusive is so not helping me

This week was the big MRI. The MRI that we’ve been putting off for a long long time. Finally, it’s over, or so we thought.

Let’s get right to the news about it. The answer is inconclusive. They cannot yet make a definitive diagnosis if she has tethered cord, or any other condition. ARG!!! We hate not knowing! The doc said that he will pass along the test to a neurological surgeon to see if he can come up with more answers for us. What they did see in the MRI was that her “conus”, the base of her spinal column, is still low lying, just as it was with her initial exams when she was still an inpatient as a preemie. But they could not see any masses, or anything that would for sure point to a tethered cord diagnosis. The other thing of note, is that her conus is more posterior, rather than centered. Since she is not experiencing any clinical symptoms of tethered cord syndrome, that is another reason they cannot diagnosis and treat it. Hopefully the Neurosurgeon can give us a good opinion.

Here is River and I waiting for her MRI, she is feeling very relaxed after being given Versed. She received an IV in her hand, and then was eventually given Propofol to fall asleep for the 25 minute MRI. She was actually quite silly to watch being sedated. She fought it, but in a happy cooing way. She waved at the nurses, and babbled a lot. The MRI experience was very benign for her, thankfully. We want to avoid any medical related trauma for her, naturally.

But in very Conclusive news: River is doing fabulous with her feeding therapy and oral skills!!! This week was a great one for oral advancement. This week during our Mended Little Hearts meeting, we were trying to entertain her with a water bottle, and the lid, she loves playing with lids of all types. I noticed her suckling at the lid edge when I was giving her a sip of water. The next day I gave her a bottle (baby bottle) of juice, I was able to get her to suck a few times. She is very willing now to take a bottle nipple in her mouth now, mainly to bite on, but still she gets the juice out and swallows it. This is just great! She opens her mouth wide for me to put in if she’s in the mood. She has even tried out a few new textures this week. Applesauce and some yogurt melts, both which previously elicited gag response from her. She is doing well with both of these this week! She is actually eating maybe TWO teaspoons worth of food a day, as opposed to her one teaspoon that she’d been achieving.
We are all very excited with these noticeable changes!

Food play with Brother

We’ve been getting out the play food and play pots and pans for her lately, and she loves them. Ewan jumps right in to play with her, and she gets a ton of encouragement from him to put spoons and food in her mouth. You can’t see it very well, but there is applesauce all over those toys, and anything she puts in her mouth she gets some flavor, and then we will also give her a spoon of applesauce during the play and can usually get a bunch of bites down her. What a good girl!  And as soon as she’s ready to be done, she is effectively using the “all done” sign! She loves to tell us All Done now, whenever we are doing PT exercises, feeding her, or trying to put her to bed. LOL! She knows what she doesn’t like!