Delightful

This weekend we were busy getting the house ready to put on the market later this week. Despite being busy, it was a totally delightful weekend. It was the first time in 19 days all 5 of us were at home!

In between items on our task list, we finally celebrated the end of the 9 weeks with the kids (just a few weeks late)- at Chickfila for Alyssa and Menchie's frozen yogurt for Jackson.

And the house is ready for market, just 1 week past our plan. Given the 12 days in the hospital, not too bad!

Storybook Parade

Several weeks ago, before Matthew's health crisis, I inexplicably woke up in the middle of the night wondering what costume we could put together for Alyssa to wear to her school's yearly storybook parade.  I didn't come to any conclusions that night, but in the light of the day, Alyssa and I brainstormed and came up with this idea.  Bad Kitty is one of her favorite series, so she was pretty excited we were able to create something that resembled the kitty.

Alyssa as Bad Kitty

Jackson and Matthew going to stake our spot on the parade route.

The start of Alyssa's class.

Alyssa in the parade.

3 Issues

Life is back to its normal amount of craziness. It has never felt so good!

With Matthew home and healthy, we have 3 issues to address.

1. Matthew lost more than 10% of his body weight in the last 2 weeks. He had finally made it onto the growth chart, and not eating for 2 weeks, he slid all the way off again. We need to bulk him back up.

2. For the last 2 weeks, Matthew has had consistently interrupted sleep (meds, vitals, etc) If last night was any indication, I guess this has become his new normal. He needs to learn to sleep through the night again.

3. With the undivided attention during his illness and subsequent hospital stay, he got used to being the center of attention and always getting his way. Being home and having to once again follow the rules has been a rough adjustment for him today. Hopefully he'll be less whiny and annoyed tomorrow.

Home Sweet Home!

Matthew is home! 

They removed his PICC line about 2am this morning.  By 9am, the redness that radiated from his arm to his chest had dissipated.  Thanks be to God!

We were on the road by 10:15am this morning!  There have been many trips home from the hospital in Matthew's short life, and this was one of the best ones!  Several scenarios existed during this visit in which we wouldn't have had a rosy outcome, but like he is known to do, Matthew overcame it all.  He is so strong, and though I wish he wouldn't be forced to prove it time and time again, I am so thankful that he is! 

Again, we cannot thank everyone enough for the care and support we've been given during this road bump in Matthew's journey!  We will forever be grateful!! Thank you!!



Matthew heading to the TCH parking garage, pushing his stroller while I pushed mine.

Post Surgery Day 10

The improvement Matthew has made since Saturday has been remarkable. He went from a shell of himself to the very active, social, smiling little boy he is usually. Just amazing.

This morning he started eating table food, and he has done great! Today, we must have done 50 or so laps around the floor in all of the different possible 'vehicles'- riding and pushing. Matthew even began riding a tricycle for the first time. All of the nurses have been amazed that this is the same little boy for which they first cared. One remarked that they have never seen a child do so many laps around the floor. Matthew is back to his usual self!

I was pretty sure we'd be home tonight, but midday they found the redness that followed his picc line. 4 hours later, he went for an ultrasound to see if there was a visible issue or reason why they shouldn't remove it. After holding a screaming mad Matthew down for the 33 minute scan, we still await the results. Very frustrating. We pray though that it is nothing, that they can remove the line tonight and we can go home tomorrow!

Happy and Concerned

Was very excited to post the good news- Matthew is eating solids & back to his usual happy, active self! But my excitement has been tempered by concern as the area from his arm to his chest (where his central line is) has reddened. Vascular team doesn't know why. Never excited when someone asks 'Can we take a photo?' because it is so rare. Praying it is nothing and we can get home soon!

Post Surgery Day 9

Last night was miserable. Matthew couldn't get comfortable and was crying out every few minutes. This concerned the nurse enough to call the doctor, who wondered if he needed to go back on NG suction. After putting it back on suction and not netting additional output, he was taken off suction again. Wondering what it could be, the doctor ordered a X-ray, which showed no blockage or anything else concerning! Very good news, except Matthew was still miserable. After ruling everything else out, we have surmised that he might be getting hungry. That is beautiful because it would mean his stomach was empty for the first time in 2 weeks.

This morning, they ordered the removal of his NG tube and a trial of very small amounts of liquids. So far, so good. They gave him a tray of liquids for dinner and because of miscommunication between doctors, Matthew enjoyed some jello, a bit of broth, and some apple juice before being told he should still only have small amounts. Looks like he can start a liquid diet (with dr approval) soon. Very encouraging!

His labs were off again this morning, reminding us that the sooner he can get off IV nutrition the better. Hopefully soon!

Matthew was much more Matthew like today, spending a good part of the day being happy, but was put out for awhile when they woke him from a nap. Even when Mattie is put out, it is better than the last 2 weeks, as he now has some fight in him!

I am so encouraged by his improvement since Friday! Thanks be to God!!

Post Surgery Day 8

Though Matthew is a long way from being his normal self, we have glimmers of our social, smiling, sweet Matthew. Yesterday, Matthew had about 15 minutes of smiling and being his usual self. Today, he's had about 30 minutes total in 3 stretches. It is so uplifting to see him smile, to see that twinkle in his eyes! It always warms my heart but after not seeing it for 10 days, and being unsure of when we would again, my heart sings when he smiles! Today, he has enjoyed talking on the phone and FaceTime-ing the most. Too cute!

His NG tube was taken off suction today to see if he could tolerate it. So far, so good. If he throws up or his belly gets distended, he'll have to go back on it. If he handles it well for 24 hours, he might get the NG tube removed and attempt to drink liquids. Oh, he is going to be so excited to do so! We pray for only positive progression from here on out.

Again, thank you to all for the care and concern for Matthew and for us! It means more to us than we could ever convey!

First Step to Home

The doctors have okayed a trial of taking Matthew's NG tube off suction. This is the first step to going home. He needs to handle it well for at least the next 24 hours. We appreciate prayers and positive thoughts that Mattie can handle this step!

Smile and Laugh

I was sitting on Matt's bed with him this morning, watching videos I had on my itouch of the family. I didn't even think he was watching, until I watched a video of him playing with a jack in the box. I heard a chuckle from the bed, something I havent heard in 10 days. When I turned to look, Mattie was smiling! He smiled and laughed a good 15 minutes while we watched home videos. Right now, he is back to fussy and unhappy but I take this as the best sign yet that he is on the mend!!

Post Surgery Day 7

Matthew has been miserable for 10+ days now, with surgery a week ago this morning. Our typically active, joyful Matthew has been a shell of himself.

If awake and in bed, he is usually whining or crying if not being actively comforted. He will motion to tell you how to comfort him-- pointing to his head if he wants you to stroke his forehead, pointing to his chest or knee if he wants you to rub it, or grabs your hand if he wants to hold hands. He is still so sweet.

He is most content (and that is very relative) when sitting in the stroller making laps around the floor. Even then, passerbys comment how sad he looks. Hard to believe it is our typically social, smiling Matthew.

Things that usually make Matthew smile right now make him cry. Forget playing peekaboo or taking his picture or even smiling at him. Also making him cry is anyone in scrubs or a white coat who enters his room or approaches him in the hall. Poor sweet Matthew.

Matthew has shown encouraging signs in the last 24 hours, but my enthusiasm is tempered by the setback he had on Thursday. I think this weekend will be telling. I pray he is on the straight, upward trajectory now.

Thank you for the prayers, well wishes, texts, emails and calls of support, the visits and offers to help. We are so fortunate to have so many amazing people in our lives. Thank you!

Post Surgery Day 6

I was increasingly getting concerned yesterday. Matthew's X-ray came back showing continual blockage. His labs came back with normal potassium but low phosphorus. His stomach output was twice what it was the day before and a much darker (concerning) color. Pretty much negative progress. Not good at all.

The resident indicated last night that Matthew might have to go back to the OR. The fellow then indicated that we may wait up to 2 weeks from original surgery date then go back in. I flipped out at this, as I can't imagine Mattie having negative improvement (as well as cascading interventions and chemical imbalances that could impact his heart and kidney) for another week and a day, then start this process all over again. We need a better plan.

So, I have a laundry list of questions for the attending today. As well, I think my freak out concerned the nurses, so they have called the patient advocate to make sure our concerns get addressed and we are comfortable with the treatment plan.

Last night was actually a restful night. Matthew and I got a good amount of sleep. Even more encouraging is that Matthew seems to be making positive progress again, though I am leery of getting too optimistic about it because of the backslide yesterday. His stomach output looks better again today, and the nurse is hearing gurgling in his lower belly with a stethoscope. His labs have improved, though still not in normal range.

I pray and pray all of our worry and contingency planning are for naught and Matthew's intestines awaken soon. Thank you for praying too.

Post Surgery Day 5

Just as mysterious as the drop, Matthew's potassium levels are up to normal today. This is delightful news. Low potassium levels dramatically increase the risk of sudden cardiac arrest. With his levels back to normal, we have taken a big sigh of relief.

Now we still wait on the intestines to wake. We are less encouraged today, as Matthew had to go back on the suction NG to remove the fluid build up from his stomach, and the output color has reverted back to a less optimistic color. So, we wait.

In the meantime, Matthew got in his morning walk to and from the wagon, and with Grandma Joy, took 10 laps around the floor in the wagon. Hopefully after a nap, he can repeat it this afternoon. I wouldn't say he enjoys the ride, as he's not enjoying anything at the moment, but he tolerates it better than just about anything else here.

He's weaned off the morphine. One step closer to home! I keep telling him that we want to bust out of here this weekend. I sure hope he is able. I miss my smiling, active, sweet Matthew and look forward to seeing him again soon!

Thank you for the continued positive thoughts and prayers for sweet Matthew!

Post Surgery Day 4

Last night and this morning were rough. Matthew had additional potassium added to his IV, with a blood draw to check levels 2 hours later. With the additional levels, his potassium still decreased a bit. His heart rate kept dipping below the lower threshold, so the alarm kept going off throughout the night. As well, he doesn't want to be held but does like someone close. I crawled into bed with him, held his hand, and we slept off and on the best we could through the night.

This morning, he has been much fussier, but his lab work from this morning shows improvement. His potassium levels are still below normal, but they are getting closer, and that was without additional potassium.

I am much more optimistic now than I was a few hours ago and much more confident these issues will go away as soon as he can eat again. To that end, it may be a rough day for Matthew, as I am going to push him hard to (1) avoid the morphine (2) walk many more times today and (3) sit up much more often. It isn't going to be pleasant, but those should help speed this along. The sooner his intestines wake up and he can eat, the better we will all be.

Post Surgery Day 3 Evening

We really should know by now that Matthew's road is rarely as straight as we would like it to be.

This afternoon was particularly concerning. Matthew was very lethargic. His labs were concerning with low potassium. His heart rate was abnormally low. His EKG showed irregularities. His blood pressure is high. All of this might be related to the potassium imbalance. Now the question is-- why does he have such an imbalance given he is getting potassium through the nutritive IV?

His surgical team has reached out to renal (who are experts in potassium, always a bit scary for us to hear, as we always worry about his 1 kidney) and cardiology (which we thought was in the clear since his heart fix). He has labs ordered, follow up EKG results, and a chest X-ray on the way.

Darren and I are praying that Mattie's intestines wake soon. We hope and pray this cascading intervention can be stopped once we 'cure' the first ailment, which was his inability to eat because of his intestines. We have reason to believe he is on the mend in that regard- as stomach contents show signs of improvement, as well as increased bowel sounds overheard thru stethoscope.

Thank you for the positive thoughts and prayers for full healing for sweet Matthew!

Post Surgery Day 3 Morning

Yesterday evening was great. Matthew walked a little bit, needing only a little assistance. Then he took a ride around the floor in a wagon. And we capped off the evening by blowing some bubbles. All of these activities aid in his healing. Walking and sitting upright help to get his intestines moving. Blowing bubbles helps expand his lungs and keep out the gunk that cause infections. Sadly, he still isn't showing any joy or happiness, but when I asked him if he wanted to take another lap in the wagon or blow more bubbles, he said yes. He doesn't appear to dislike it, and that is a win right now.

After our busy evening, he knocked out and I wasn't far behind. Unfortunately, the nurse assistant decided to wake him to change his diaper about an hour later and he was awake every 20-30 mins throughout the rest of the night. Needless to say, I was none to pleased with that diaper change. He just couldn't get comfortable. I take that as a good sign that he is healing and ready to sleep on his side or stomach, which he hadn't quite managed at that point yet.

Since we've been here, Matthew's heart rate has gotten lower and lower. I've had them lower the alarm threshold a bit more every night. I was going to bring it up this morning, but the surgical team had already noticed. Matthew had an EKG done this morning and we are awaiting a consultation from cardiology. Sinus bradycardia is the technical term and this isn't the first time he's had it, but is the first since his heart was fixed. Hopefully it is just the after effects of anesthesia (which he had Saturday and yesterday).

Also, Matthew's labs came back concerning this morning, so they pulled them again. The 2nd sample was also concerning, but they though it might be a false reading because it was pulled from his central line which is typically putting in the IV nutrition. So, they are running a 3rd set, this time from a finger prick. Hopefully it was just a false reading.

The gunk we are pulling out of Matthew's belly gives me hope that he is on the mend. The color, consistency, and volume is improving. I pray his intestines wake up very soon and he can drink and eat. He misses that very much. Every hour or so when he is awake, he points at the water faucet in the room and whines.

Because of his desire for food or drink, we cannot eat or drink in front of him. (That would just be mean!) This is an additional challenge this hospital visit compared to our other visits when he didn't care, as someone needs to be in the room with him all the time. So far, we've managed by drinking water in the bathroom out of his view and sneaking food when he is asleep.

He's currently napping on his side (first time he's managed that!) and we plan on another walk and wagon ride after he wakes. Hopefully today is full of healing and good news!

Post Surgery- Day 2

Mattie is still holding his own. He had a rough night last night, as he just couldn't get comfortable, but today seems better.

The oxygen and foley catheter came out today and the central line for IV nutrition went in under anesthesia.

We are waiting for his intestines to wake up, with the first indication being a change in color of the stuff we are pulling out of his stomach thru the NG tube. I think it has improved, but not as much as it will when his entire system is functional again.

He just wants to lay in bed, but I am hoping to convince him to take a walk this evening. It should help him heal.

He has been waving at people today, which is progress over the last week of him being pretty anti-social.

I think he's slowly on the mend. Not there yet, but I look forward to him being his usual sweet, happy self.

A big thank you to all of our friends and family who have emotionally, spiritually, and physically supported us through this slight curve in Matthew's journey! Thank you!!

Post Surgery- Day 1

Matthew is holding his own. He's hooked up to a plethora of tubes and wires-- IV (with 3 incoming lines), oxygen, NG tube, monitors, and a foley catheter. His arms are covered by 'no-nos', arm splints which keep him from bending his arms, which keep him from trying to take out his tubes or IV.

If he is awake, he is whining. He often points to the door, in hopes he can leave (we tell him sorry, you have to stay), the food because he wants to eat (which we have since hidden from his view) or the water bottle in hopes that he can have something to drink (we hid that too). He is NPO (nothing by mouth) until his intestines wake up. So we wait.

Thankfully, his pain seems well managed with just a bit of morphine and periodic tylenol. He has been asleep the majority of the night and day.

They began nutritive IV fluid today since he hadn't had anything to eat since Tuesday. I freaked a bit because I know it is hard on the veins, but acquiesced since it is a modified version meant to go in a peripheral vein and the benefit outweighs the risk at this point. He needs nutrition to help him heal. Tomorrow he will have a central line placed so the IV nutrition will go into a larger vein more able to handle the load.

I am sure the nursing staff, and the doctors are already tired of addressing our concerns, as Darren pushed them on why the foley cath is still in place (we will continue to push for removal), and I did on the nutritive IV and additional fluids. I have warned them that for everything they order, they need to explain it to me and be ready to answer the risks and how it might affect his 1 good functioning kidney as well as his other uniqueness like his unusual venous structure. I am sure they will be as ready for us to leave as we are!

Surgery Report

Matthew's surgery went well. The surgeon removed a lot of scar tissue (adhesions), one of which was creating the bowel blockage. It was a bit more complicated than he originally expected.

There was one area of small intestine that concerned him, but he left it in and will monitor him closely. In 48-72 hours we should see improvement. If not, the surgeon may have to open Matthew up again to resection that part of the intestines.

Matthew is on pain meds, an IV, a NG tube, and a bit of oxygen. Hopefully we can manage his pain and his tummy will start healing so we can make our way home. The doctor expects that Mattie might be here at TCH for a week.

We have been better able to help Mattie because of the support and encouragement we've received. Words are not enough, but thank you!

Surgery Scheduled

After the 2am CT scan indicated a bowel obstruction, probable adhesion, and a situation in Matthew's belly that could possibly compromise his intestines, they have scheduled surgery this morning as soon as they can get the OR ready. Please pray for a successful surgery and quick recovery. Thank you!!

Now At Main Campus

We were transported via ambulance from west campus a few hours ago in anticipation of Matthew potentially needing surgery. If he needs surgery, history indicates it is important an ICU is near. He handled the ride well, but if that is my last ambulance ride, I'd be okay with that.

Mattie is not pleased with the NG (nasal gastric) tube pulling bile from his gut. I have to hold his hands down so he won't pull it out. Thankfully, I had a friend come and relieve me of hand holding for a while. Thank you, Ana!

The plan now is for a CT with contrast tonight. Not sure how they expect him to hold down the contrast as its about 10x the fluid he's had over the last 3 days, but Matthew has surprised me before.

The doctors are looking for an adhesion that developed after his original malrotation in 2010, which may be causing the blockage. If there is one, the CT will help them focus on the right area when they perform surgery, which will be tonight if they find something urgent or tomorrow if they find something but it's not emergent. We pray for nothing urgent!

Green Bile Is Bad

That is what Matthew's surgeon told us many years ago, before Matthew's 1st surgery July of 2010. So, when Matthew threw up green bile today, it was time to go to the ER.

Since our arrival 2.5 hours ago, Matthew has had an X-ray, an ultrasound and an IV. I really expected this to be nothing, but alas, Matthew has a bowel obstruction caused by a likely twisted bowel. He will likely need surgery. They are consulting with the general surgeon that performed his intestinal malrotation surgery. Not sure next steps, but expect to hear more soon. Thank you for saying a little prayer or well wish for sweet baby Matthew.

A Stomach Bug for Matthew

Matthew has had a rough couple of nights and days.  He began crying out periodically about 9p on Tuesday night, and then started throwing up at 2am on Wednesday morning.  He proceeded to throw up or dry heave every hour or so throughout the night, tossing and turning, moaning and crying between bouts.  Wednesday, he rallied a bit during the day as he hung out with my mom, but proceeded to keep throwing up, crying, tossing and turning, and generally being miserable through the evening, last night and this morning. 

Thankfully our pediatrician had an open appointment this morning.  Matthew got a shot which the doctor thought would stop the vomiting in its tracks and we went home with an Rx for more anti-nausea meds and another antibiotic (for yet another ear infection).  The pediatrician's best assessment is that Matthew would likely only want liquids for a few days, solids maybe this weekend. 

Matthew drank a little water on the way home from the pharmacy and then went straight to nap afterwards.  So far, he's held it down which is a big improvement.  Hopefully he is on the mend.  Poor little man!

 

 

4pm post script:  Matthew is throwing everything up again, including the dose of anti-nausea meds.  Poor kiddo.

Gray Day

Today is just a gray day. 

The skies are overcast, and a cold front is expected to blow through sometime this afternoon. 

Matthew was up screaming and crying every 20-45 minutes last night, with periodic spells of vomit. 

And I have been dreading going to school today because of the horrific event that transpired yesterday just a few buildings over.  I knew I had to be at school today, regardless of the sick child and no sleep.  (Thank you, Mom, for caring for very pathetically sick Matthew!) Though some students may need the time away from campus, others equally need to be in their routine. 

Campus today was quiet and somber- very unlike the typical day on campus.  Unsettling to say the least.  The 4 news trucks across from campus were a jarring reminder of why.  The students who were here (about 2/3 of my 1st class did attend today) wanted to talk about what they saw, heard and experienced. 

I am in no way a mental health professional.  I have always told my students that my job is to help them be successful, so I talked up the counseling available on campus, the debrief sessions put on by the administration, opened the class up for discussion, and created a list of our suggestions about campus safety and notifications to pass along to campus administrators.  It was all I could think to do to address the unthinkable, and I hope it is enough.  I typically love my job, but today it was much harder than it has ever been. 

Hopefully tomorrow will be a little less gray.

Counting Down

I am counting down--

12 more days that I teach this semester. (just 4 more weeks!)

16 days until the Hoy House-Houston goes on the market.

22 days until we close on the Hoy House- Austin.

7 more weeks of school for Jackson and Matthew.

8 more weeks of school for Alyssa.

Yippee!

No Time for Procrastination

One positive to having a packed schedule and solo-parenting during the week, I no longer put something off until it becomes an emergency. 

Last week, I took the car in to the shop.  I would typically wait until it can't wait any longer, but (1) I had a friend in town who helped get me to and from the shop and rental car place and (2) the thought of being stranded on the side of the road with 3 kids, or worse, by myself unable to get the 3 children, made me be a bit more proactive than I normally would.  Thankfully I didn't wait, as the wheel was about to fall off the car.  If it had, it would have resulted in what the mechanic called a 'likely catastrophic' accident.  Whew!

On Sunday night, Matthew had a rough night and sounded a bit croupy.  Though I would normally wait and see, I booked a pediatrician appointment for Monday morning, as the idea of a late night ER visit sounded very bad.  No need to treat for croup, but Matthew did have a raging ear infection.  No wonder he was so cranky.

This morning, I went to the ER for some abdominal pain I have been having for over a week. Though I would normally wait and see, I really can't wait to see if it becomes a persistent health issue. Thankfully, I don't have one.  The pain likely comes either from a ruptured cyst or a slight hernia.  The ultrasound put my mind at ease that it wasn't something more concerning.  Another whew!

Hmmm--maybe not procrastinating is the way to go.  A novel idea for me!

Random Bits

Child-Proof Caps:  A few weeks ago, I found Matthew on a step stool in the bathroom with an opened bottle of advil (actually generic advil).  Thankfully, he was trying to put the pills back in the bottle instead of putting them in his mouth.  (That would have been VERY bad!) I assumed I didn't tighten the cap, but about a week ago, I found him opening that same bottle.  Now I know it has to be well out of reach-- out of step stool reach.  I assumed it was a faulty cap.  I was wrong.  I bought a bottle of probiotic (with a child-proof lid) today and Matthew had it opened in no time at all.  I think he opens them easier BECAUSE he doesn't have thumbs, not in spite of it.  Watching him do it, without thumbs, he has to push down to get leverage to get the top off--the perfect technique to open child-proof caps.  Full of surprises!

Little Mommies:  As I think of Matthew navigating the educational system, I pray that he finds a little girl or group of girls that care and love on him like Alyssa always has.  Thankfully, he has found that at preschool.  A little girl in the 4 year old class loves him.  She is his 'little mommy' at school.  At naptime, she lays next to him and pats his back until she has to go home.  Just too sweet.  I pray that he always finds that care and acceptance. 

Matthew and his school little mommy.

Mad Flat Stanley:  Jackson brought home his rendition of Flat Stanley home today.  When I asked why he was so angry, Jackson responded "He's a zombie!"  Well, of course!

Jackson's Zombie Flat Stanley

Show and Tell:  Alyssa turned in her good behavior tickets at school for an opportunity to bring something for 'show and tell' today.  She was excited to show her Color Run tshirt, her before and after pictures, and share her experience with her classmates.  I'm excited that she is that excited.  Now we have to find the next race!

New Hoy House:  We put an offer in on a house in Austin this weekend, and are currently 'under contract'!  It didn't meet all of our criteria, but was pretty close to perfect.  I can totally imagine us living there, walking to the end of the street to the park and pool, and biking to school!  Now, the craziness of inspections, appraisals, financing, closing and moving.  As well as getting our house in Cypress ready to put on the market by the end of the month.  I'm excited and a bit nervous at the same time! 

Likely the new Hoy House!