Monday, April 28, 2008

Test Results

Results came in today. First of all Abby's blood work came out normal! Yeah! It doesn't look like she has any sort of infection (CRP level) and her hypothalamus is "probably" not the cause of her wacky temps. I suppose we can chock her low grade fevers into the "Fever of Unknown Origin" box and leave them there. Honestly we haven't been paying too much attention to her temps lately because other issues have taken precedence. Yesterday it was 99.8, which 'technically' isn't considered a fever. Hopefully this issue will eventually resolve itself... but in the meanwhile, we will turn our energy towards other things.


The GI office called with her Gastroscopy and pH study results. Despite efforts to prevent/decrease Abby's reflux over the past 6 months (increased Nexium, and J-feedings), her esophageal biopsies showed reflux. Although this is discouraging, we aren't surprised.

Official report: "The pH probe study didn't show a lot of reflux but what did come up is very irritating to her tissue".

This report didn't seem very quantifiable or comprehensive, so I pushed for more details. Unfortunately the doc doesn't make these calls himself, so the nurse who is just reading from a brief summary can't usually answer our questions. As I tried very hard to be patient and friendly I still wanted more info. She was able to tell me that the test showed a total of 17 episodes in the 24 hr period. This didn't sound too bad to me initially, remembering that Abby's first pH probe (6 months old and 5 lbs) showed over 500 episodes! But then realizing that she is not getting any feedings into her stomach and is only secreting gastric juices that are still backing out of the stomach into her esophagus seems concerning. She wasn't able to tell me how long the episodes lasted and if they correlated with the diary we kept during the test.

The doc ordered an increase in her Nexium to 3 times a day, and encouraged us to try Carafate (a liquid coating). This should be interesting as Abby will have to swallow 2.5cc of liquid. Might not seem like much but you'd be surprised what a challenge this can be in kids with dysphagia and oral motor dysfunction... not to mention a kid who just plain Hates to swallow! We'll see how this goes. We are supposed to give it 2 weeks before we consider more aggressive measures.

I'm guessing we will go back in to speak face to face with the doc about the results and obtain more detailed information and hopefully form some type of plan.

Abby had feeding therapy today. Her OT has noticed a sharp decline in her oral skills and swallowing since last fall. Abby no longer tolerates the hour long session like she did before. There are no signs of swallowing at all, rather big sloppy messes in the bib. We still plug along trying to give her a fun oral experience with hopes of feeding improvements to come.

Josiah has started potty training! Yikes. I don't know how committed he is to his new potty chair yet, but I guarantee he will have plenty of opportunity to become very familiar with it. We bought him some super cute Big Boy "undies"! He likes wearing them.

Useful Potty Training tips are welcome!

Thursday, April 24, 2008

Endoscopy Day

Today Abby had her Gastroscopy procedure. We got to the hospital bright and early at 7 am for outpatient admission, then off to the procedure unit.

After a clear warning about the quality of Abby's veins, the nurses were able to find a good one for her IV and blood was drawn for labs after 4 sticks. Prayers were being lifted up not only by me during this yucky time, but also by the nurses! I was so thankful to see blood dripping into the little viles. I'm sure the neighboring patients were wondering why we were cheering and clapping behind our curtain.

Abby truly is a brave soul. I was so proud of her. She tolerated the Gastroscopy procedure really well and didn't need any extra support while being sedated. The GI doc discussed what he saw and explained that her esophagus actually looks a bit better than what he saw last October! I could tell by looking at the pictures he took. He added that just because the esophagus looks better now after 6+ months of J-feedings doesn't mean that she isn't still having terrible reflux. We discussed the Fundo surgery again and he pretty much left that up to us. If her symptoms remain constant and she continues to seem uncomfortable then we should consider it.

The pH probe was placed after the procedure while she was still asleep. Another big praise... one less thing to stress her out. You can see in the pictures the tube taped to her nose and cheek... and notice how cute she looks even with it in!

Poor baby has to have elbow restraints on both arms to keep her from pulling the tube out. The nurses were surprised how quickly she was able to reach for the tube as soon as she woke up. So for the next 18 hrs she will be an unhappy, thumb-less little girl. For those of you who know how much Abby loves sucking her thumb, this is a problem!

After all that excitement we headed over to meet a new doctor added to Abby's list. She was very nice and very thorough! Naturally our discussion was long as we described Abby's history including NICU stay and all the surgeries. This visit focussed mainly on her seizure activity and patterns we've noticed. She increased the VNS settings and changed a few details about her meds.

We got to see the EEG print out while the doctor explained the results. Abby had several spiking episodes occurring in the right parietal lobe lasting several seconds. It is this type of brain activity that produces seizures if it keeps firing for more than 10 seconds. We shouldn't see any clinical signs (or seizure like activity) when these spikes are short lasting, like what we saw on her test. She pointed out 4 or 5 different episodes during the 1 hr test where this spiking was noted. It was nice to get a visual and an explanation of what they are looking for during the EEG. Fascinating but heart heavy information to hear.

As usual, Josiah hammed it up with the nurses. They thought he was funny. He remembered where all the stuffed animals sit on different desks from last weeks' visit!

Monday, April 21, 2008

April EEG

Today Abby had her first EEG since the VNS placement in December. She was supposed to be sleep deprived for it, so by the time her head was hooked up to all the leads she was pretty grumpy. But as planned, she quickly fell asleep and remained calm for pretty much the whole test (1 hr).

As with most of our appointments, our little supporter and comic relief came along too. He spent most of his time eating and chatting with anyone and everyone who would listen. Today he ate a PB&J and drank his apple juice, occasionally shouting out an exciting new observation. Because Abby was resting during this test and the lights were dimmed, he would frequently turn to me and put his little finger to his mouth and whisper "shoosh, mommy. Abby's night night." I suppose soon they'll be able to do this without me!

On days like today I often wish I had another degree or more training. Today it would be EEG interpretation. As I sat watching Abby's brain waves dance across the screen, I so desperately wanted to know what they were saying. But b/c the technician is sworn to secrecy, we resorted to chatting about meaningless, random topics that you might overhear any strangers talking about. So now we wait to meet with the neurologist who will decode the message for us this Thursday, and hopefully deliver promising news.

We know that the VNS has pretty much taken care of the 'startle' type seizures that she was having 20-30 every day. This is very exciting!

As for the grand mal seizures, they still attack in clusters. Sometimes several in one day and sometimes they space out to include 1 or 2 in a day for a week or so. There is no telling when she will have one except for a brief warning period right before it starts when we notice Abby signing "all-done, all-done" over and over again. Amazingly at this point we can often stop or delay the seizure from manifesting itself fully by using the VNS magnet. This is so wonderful! It doesn't work every time but when it does we feel a wave of thankfulness because we hold something tangible we can use to keep her comfortable.

Next on the list this week:

An upper GI series first thing Thursday morning, which also includes the insertion of a pH probe. She'll wear this home for 24 hours. We are praying it will show the doctor an accurate picture of her reflux status. The last pH probe she had 2 1/2 years ago didn't give us anything to work with.

Abby has also started receiving home-bound services through her school. Due to prolonged illness and crazy fever patterns we have kept her home most of this semester. The OT came last week and we are hoping to see the PT this week. It's good for me to be reminded of what I need to be working on with Abby while she's home. Plus I need ideas on how to keep her focused and entertained. This is my biggest challenge. It's so different than teaching Josiah. He's so independent and playful! He doesn't need my help to have fun. With Abby, I need to be literally hands-on for her to interact with her environment at all. So lately I've been trying to come up with a more creative routine so that I'm interacting with both kids during their waking hours appropriately.

Another area I wish I had a degree in!!!

Friday, April 18, 2008

Rejoice in the Lord

Psalm 32: 5-11

"Then I acknowledged my sin to you and did not cover up my iniquity. I said, 'I will confess my transgressions to the Lord'- and you forgave the guilt of my sin.

Therefore let everyone who is godly pray to you while you may be found; surely when the mighty waters rise, they will not reach him.

You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you. Do not be like the horse or the mule, which have no understanding but must be controlled by bit and bridle or they will not come to you.

Many are the woes of the wicked, but the Lord's unfailing love surrounds the man who trusts in him.

Rejoice in the Lord and be glad, you righteous; sing, all you who are upright in heart!"

We rejoice because the Lord is trustworthy! He is able. I read this passage at a moment of need, in the dark of night. Lord, help me not be like the mule.

We met with Abby's Endocrinologist Wednesday morning. This individual is always very kind and thorough, asking about all the areas of Abby's health and development. I appreciate that.

We discussed her fevers and the frequent irritability that has become part of her days. He explained about her (known) hypothalamus dysfunction and how that could possibly be contributing to her temperature fluctuations. He also mentioned that she most likely also has a growth hormone deficiency. This could play into the way her body handles stress, especially illnesses. He said it was a good sign that she has been able to fight off infections on her own.

He was concerned with her increase in seizures and her decline in development and general interest in activities. Labs were ordered to check different levels related to the things we had talked about. He brought up her shunt as being a possible culprit. Usually I'm not concerned about a shunt infection, but remembering that she did have surgery near her shunt in December made me worried. The risk of infection is there.

We are waiting for our pediatrician to help set us up with a good "sticker" at the hospital, in order to spare Abby any unnecessary pain. Most likely he will order additional labs to check for infection also.

I'm slowly learning to give everything up to the Lord. It's difficult not to worry, but I know He is able.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

Ephesians 3:20-21

Tuesday, April 15, 2008

Family Fun

Families are so wonderful! Last weekend we headed to TN and enjoyed some fun-in-the sun with ours.

Special time with Grandma, Papa and Aunt Connie, and a trip to Frozen Head State Park with cousins Anna and Norah. The kids enjoyed blowing bubbles and throwing rocks in the stream. I think they were more interested in the water than they were in the slides!

One last visit with Bill, Shannon and little Maddie rounded out our mini vacation. The "boys" (Patrick and Bill) took off Thursday to ride ATV's in the mountains. From the looks of their clothes, they had a blast in the mud! (literally) We were just glad they came back in one piece.

Abby update:

The GI office called last week about Abby's Barium swallow test results. The nurse explained that they are treating her reflux as aggressively as possible at this point. She told us that if Abby continues to have symptoms or we can't decrease her feeding time and keep her at a good rate we would need to consider the Fundoplication surgery.

Patrick spoke with the GI nurse again today about Abby's continued symptoms (moaning, burping then pulling hair and acting very upset, etc) and requested that we look into it further.

At this point it's not a question of whether she is refluxing, but how much and how often. There were times today when I literally heard her burp, saw the bubbles in her mouth and proceeded to watch her cough from it. Meanwhile she started pulling her hair and putting her fingers in her mouth to bite. It is incredibly draining to observe this happening over and over again... with nothing in my power to help her.

In the back of my mind I'm wondering where in the world is this reflux coming from? She isn't being fed in her stomach any more so it must just be stomach juices. How could such a small girl pump out enough juice to cause such BIG problems?

I guess it's no different than when she was a 4 lb baby with the same symptoms. The hope was always that she would grow out of it.

Next Friday she is scheduled for another upper GI series to check her esophagitis and see if it has changed. While she is asleep for this procedure they will place a pH probe (NG) that will stay in her esophagus for 24 hours. It will be fun trying to keep that in... but at least she can wear it home this time.

We are praying for clarity and for wisdom in this decision. Hopefully these tests will give us a bigger picture. Only the Lord knows her needs, and only He knows how much we want to make her well. In the end, we trust that He will walk us through this dark place.

Monday, April 7, 2008

Back to Radiology

(A sliced image from Abby's CT)

Last week Abby had a CT of her chest, abdomen and pelvis. Mostly to look for signs of aspiration in her lungs, but also to check for any other possible cause of her fever. We heard from the GI doc's office with a report that the CT "looked mostly ok" and that it didn't look like she was "aspirating all the time." Not sure exactly what that means except that we aren't as concerned about aspiration as were before the scan.

(This one's cool b/c you can see her VNS implant-upper right)

For a few days I inwardly felt like we should just give up looking for a reason. During that time I pretended her temps were normal and only checked them occasionally while skipping a few days. On the days I did take her temp it has been either just under or just above 100 F. The bummer is that she seems like she feels yuck. Today she mostly wanted to be held or wanted to sleep.

We went to the hospital again today for her Barium swallow study. Fortunately the OT that works with Abby on feeding every Monday was available to administer some of the test. It's always nice to see a familiar face. The test itself went fine, although Abby refused to swallow the nasty Barium yogurt so they weren't able to see what happens during a swallow event. We were able to then feed Barium juice into her G-tube in an attempt to observe her typical daily reflux episode. As luck would have it we didn't see much action during the short time the radiologist was willing to stand there and wait. Of course as soon as he left the room she started arching her back and then we saw the Barium juice come rolling out of her mouth. At least the OT observed it so she can include it in her notes.

So all in all we are back to square one with no answers to the fever puzzle.

On a fun note, we had special visitors this weekend! Patrick's cousin Bill, his wife Shannon and their darling little girl Maddie carved out 2 days to come hang out at our place. Bill is in the Marine Corps and has been over seas much of the past several years. We don't get to see them as much as we'd like, so this was a treat. It was also the first time for us to meet little Maddie. What a doll baby, and so happy! It was fun seeing the cousins together.