Another Echo...

We're sorry for the lack of updates since we've been home. We would love to say that it's because we've been enjoying our happy little boy, but we haven't had a happy boy yet. We've spent the past several days trying to figure out why Matthew has been so incredibly fussy and irritable. We've been a little surprised by this because we've heard so many stories about how happy hypoplastic heart babies are after their Stage 2 surgery.

We waited to call his Doctors for a few days hoping (and praying very hard) that it would subside but it didn't so Amy made the call to his pediatrician today and she squeezed Matthew into her (she's very good to us) busy afternoon. Her first thought was that he may be reacting to the increase in his Clonidine medication from 50 mcg's to 100 mcg's (they did this right after surgery). Some of you may recall we had an "incident" with this medication during another stay in the hospital when his Clonidine patch was increased from 50 mcg's to 150 mcg's and he nearly stopped breathing on us. Her argument made sense to us. Before having us reduce the patch size, his pediatrician decided that she needed to talk to Matthew's cardiologist first. She called us back at 7:00 PM tonight (did I mention she's good to us?) to say that Matthew's cardiologist didn't think it was the Clonidine, but could possibly be an illness called pericarditis.

Pericarditis is caused by inflammation of the lining around the heart (pericardium), which results in an accumulation of fluid around the heart (pericardial effusion). Apparently it's not uncommon for pericardial effusion to result following heart surgery in children.

Matthew's Cardiologist asked that we bring Matthew in tomorrow morning for another Echo (yuck!). They should be able to tell through the Echo if the lining is inflamed or if there is fluid around his heart.

So, here we are again, asking for prayers for our little boy. We're really hoping that after the Echo the Cardiologist will tell that he thinks it's just too much Clonidine after all. That would be an easy fix. We would just tear off one patch and put on another.

Home Again...

We just wanted to give everyone a glimpse of how Matthew started his day today and an even better glimpse of how his day ended. It's a pretty happy ending.

Matthew will be 4 months old tomorrow and we're happy to say that we got him home from his fifth and hopefully final stay in the hospital this afternoon.....for another 2-3 years anyway. As Amy mentioned before, the charting, measuring, weighing, monitoring...it's all done. Yeah!

We are still going to provide very regular updates on Matthew's blog, but we're also going to try to live some sort of normal life for a while and just enjoy a very smiley Matthew. From the day we got him home after the first surgery, the second surgery was never far from our mind, but surgery number three is so far away that just maybe we will be able to not think about it for a while. Instead, we will do a little day dreaming about what kind of plans God has in store for this little boy as he grows older....we have a feeling it's going to be something special.

Thank you all so so much for the prayers and support over the past four months. They have meant more than you will ever know.

Coming Home . . .

Matthew had a great day yesterday. He ate and ate and ate. It was like he couldn't get enough. They removed his central line, feeding tube, pacer wires and oxygen. He looks great. We are bringing him home this afternoon. Crazy to think that he had open heart surgery a week ago and we are bringing him home. We are so excited!!!

Life will become easier now that Stage 2 surgery is out of the way. No more charting and checking saturation's and no more shots. In 6-8 weeks, we can get out of the house (this really excites us!). Thanks for all of your love and support and most of all for your prayers. We are blessed to have such great family and friends to help us through this tough time.

We will post some pictures later today of Matthew coming home.

OK, They Were Right...

Ok, so we knew they were probably right about the esophagitis, we just didn't want to admit it because we were afraid it would mean another week in the hospital. Kelly, the nurse practitioner, confirmed that his throat is very red and he has an ear infection on top of it. Both of these are probably taking away his desire to eat. He is now back on Caraphate which is a medicine that will coat his throat and help it to heal from the esophagitis and he's on ear drops, Motrin, Tylenol, Mirilax (for pooping), Lactulose (also for pooping), Enalapril (for high blood pressure), Clonidine (also for high blood pressure and to help him relax) and baby aspirin (for his heart). Hopefully we'll cut the number of medicines in half when he comes home.

Overall he seems to be in a pretty good mood and feeling much better. We think he's probably happy that we've stopped trying to force him to eat. He had a feeding tube put in this afternoon. It's the TPT line that goes straight into his intestines and bypasses his stomach to give it some time to rest as well. They're going to rest his throat for another 48 hours and then they'll let him eat again. That sounds a lot better than 1 week.

Thank you for continuing to pray for our little man.

Still Not Eating...

Matthew is still refusing to eat. They think it might be esophagitis again but he's only taken 2 bottles since he came out of surgery so we don't see how his reflux could have made his throat raw already. There is a test they can do to confirm if it is esophagitus but they're standard practice is to just treat for it if they suspect it instead of running the test. We concerned that it may be something else but we won't know until they try to feed him again and the last time Matthew had esophagitis he wasn't able to eat for a week. If it's not the esophagitus then we'll have a whole new treatment plan. We've been at the hospital so much over the past four months the thought of another week almost seems unbearable. Thanks for letting us vent a little.

Restful Sunday . . .

Matthew had a pretty good day. He is no longer on any pain meds except Tylenol. The only thing going through his IV is fluid to keep him hydrated. The highlight of our day was seeing him smile. We haven't seen that beautiful smile since he was being wheeled into surgery. It melted our hearts to see him finally feeling better. He is still uncomfortable when he is being held so he would rather be in his bed. Matthew spiked another low grade fever this afternoon. His blood work came back okay, but we are still waiting on the cultures.

Matthew is still refusing to eat. He seems to have a sore throat so we're not pushing him. He has done this to us before. Deb, one of Matthew's nurses, reported to Dr. Fortuna that Matthew wouldn't eat and asked his opinion. He answered by saying, "It's Matthew, he will eat when he decides he is ready." All we could do is laugh because we know exactly what he is saying.

We are hopeful that tomorrow bring lots of eating, no infections and some quiet rest. Sunday has been a great day and we are ending on a high note with that beautiful smile!

Not Eating . . .

Craig and I were at the hospital late last night. Matthew is not eating and just isn't acting like himself. I tried to hold him but he always fusses when he is being held. I guess he is still very uncomfortable. One issue is that Matthew decided to stop eating yesterday. They think his throat is sore from the ventilator and that his acid reflux is acting up. They increased his Nexium so we are waiting to see if this helps. Matthew also spiked a fever last night so they are running some cultures to check for an infection. We will know more when we get the results of those on Monday.

It was a weird day yesterday, Matthew wasn't himself at all and he started this weird head twitch where he jerks his head to the right. We asked Cindy, the weekend Nurse Practitioner, about this so she checked him over and said that seizures aren't uncommon after this type of surgery but she thinks it is due to being so uncomfortable. Apparently, this stopped sometime during the night. Overall, he is doing reasonably well. Our main concern is his eating and whatever caused the fever.

This is such an emotional roller coaster. Just when it seems so unbearable God gives us the strength to keep going. God has definitely taken care of Matthew and our whole family. Taylor is spending some quality time with Grandma and Grandpa Gray. She is being spoiled rotten and loving every minute of it. She is very confused as to why Matthew can't come home. She asks a lot of questions and we try to answer them so she isn't too confused. Please remember her in your prayers too. This has not been easy on her. She tells us she misses Matthew all the time. One good thing, if we ever forget how to get the hosptial Taylor reminds us of every turn. She could probably get there by herself.

Doctors should come by Matthew's room around noon today so we will update then. Have a great sunny day!

What A Difference....

It's amazing the difference one day can make. Matthew is having a very good day today. He's still sore but has been resting comfortably for most of the day. There is even some talk of going home early next week. Wow!

We'll give some more detail later tonight.

Slow But Steady Progess...

Matthew was able to get a little more rest last night. He was up 3 different times with a lot of pain but that's an improvement over his day yesterday. They're scheduling a renal ultrasound for today to rule out any problems with renal arteries. His blood pressure is unusually high and they want to rule out the renal arteries as a potential source of the problems. We probably won't have the results until Monday.

We forgot to mention that Matthew did get his drainage tubes and foley out yesterday. He still has pacing wires in his heart, an arterial line and multiple IV's.

He is eating very well when he's not in too much so that is at least one less thing to worry about.

As you can see Matthew hates his oxygen cannula. He wrestles with it until he pulls it out and then falls asleep. They switched to a low flow cannula but it hasn't helped.

Rough Day...

It's been a pretty long day for Matthew. He's feeling pretty miserable right now and has been almost completely inconsolable. Mom and Dad are pretty frazzled. It is so hard to see him so miserable.

We have some concerns over high blood pressure and kidney function. Please pray for both of these issues tonight.

Crazy Day . . .

Wow, what a week. I'm not even sure what day it is. Craig has been doing such a good job keeping the blog updated, I've been able to focus on taking care of Matthew. We came home early tonight to get some much needed rest. Matthew had a good day overall. His vitals look great and he seems to be recovering very well. This recovery has been hard to watch. He is in so much pain and wakes up screaming every 2 hours. His voice is very hoarse so when he cries he doesn't make much noise, he just turns red and his blood pressure and heart rate go sky high. It is so hard to see my baby in so much pain and there is nothing I can do to fix it. He looks at me with those big blue eyes and is so confused as to why I'm not picking him up and cuddling with him.

Matthew was given a bottle of sugar water to see how his stomach would handle it. Nurse Practitioner, Kelly, helped as we fed him. Matthew loves Kelly!

Matthew was given a bottle this evening and he ate 3 oz, what a champ! This seemed to relax him and he was sound asleep when we left.

Thank you so much for all of your prayers. God has been so good to us. The next few days will be tough for Matthew so please keep those prayers coming. We truly feel blessed knowing that we have all of you praying so sincerely.

Love, Amy

Baby Steps...

Matthew is in a lot of pain but is doing well. His headaches wake him up every few hours and it takes a while to get him calmed down. They've done very little weaning of his narcotics at this point.

He is stable enough that they were able to move him into the corner suite where we always seem to end up. It's a little bigger and has one more window than the regular rooms on the floor. We like to think we end up in there because we're such cool people but there's probably a little more to it. He is now sharing his nurse with one other patient instead of getting the one on one care he needed when he was less stable.

He just got to drink about 15 ML's of sugar water. He sucked it down like he hasn't eaten for a week. We're still hoping he's going to get switched to the low flow cannula so he can take a full bottle.

These are all little steps he needs to take to get closer to going home.

Going Strong...

Matthew had a very good and quiet night last night. He had a few more breathing treatments which significantly improved his breathing. The breathing treatments along with the right mix of medication helped him to stabilize around 10:00 PM and he's been doing very well since.

The plan today is to begin weaning his oxygen from the hi flow to low flow cannula. The hi flow forces his airway open so he can't eat while he's on it. When they switch to low flow he'll be able to eat. If things continue to go well this could happen sometime later tonight.

They also plan to begin weaning one of his blood pressure medications today as well as the 3 pain medications he's on. These narcotics are so addictive for these little guys that they want to get him off them as soon as possible while keeping his pain under control.

Right now he's still resting comfortably. They definitely have the right balance where he's comfortable and breathing on his own, but just out of it enough that he's forgotten about his headache and incision. In fact the oxygen cannula in his nose is bothering him more than anything at this point.

We didn't go home last night so I haven't had an opportunity to add in pictures. We will be going home tonight so I hope to get some pictures on here around 10:00.

Some of you may remember that they left his chest open about 2 inches after his first surgery and we could actually see his heart beating. We're happy to say that they were able to close his chest immediately after the procedure this time. This is good not only because it was so sad to see that before, but his risk of infection is significantly reduced this way.

I really need to give some credit to Amy today. She has been with Matthew nearly 24 hours a day since he was born. It was because of her very close attention to him that she noticed an unusual change in his color, personality and saturation this week along with her persistence with his Doctors in convincing them that something wasn't right that allowed us the opportunity to catch his shunt closing before it caused serious damage. She really did save Matthew's life this week and Matthew and his Dad are very lucky to have her.

Thank you again for your support and prayers they mean so much to us.

Surgery Update #5

Matthew is still in the tweaking stage of his recovery. His airway has narrowed this afternoon due to being placed on and off the ventilator twice in two days. They just gave him a breathing treatment and will continue to watch this closely.

His heart rate is also a little fast and they're manipulating his pain medication to get it under control. He's been on so much medication since he's been alive that it doesn't affect him as much as it would a heart healthy baby so they end up maxing out his dosages to get him comfortable and cross their fingers that he'll continue to breathe on his own. He's still in a lot of pain.

You should see his nurse. She's constantly running around tweaking medications, testing blood gases, measuring urine output and drainage tubes. These PICU nurses are sharp and work very hard to provide good care. (I wrote this just in case one of the PICU nurses reads his blog today)

His oxygen saturation is now fluctuating between the 80's and 90's. He'll probably settle into the upper 70 or lower 80 range when he comes home. He's been so blue for so long that with his increased blood flow to his head his lips now look very pink.

Surgery Update #4

Thank you Jesus! Matthew has been out of surgery for about an hour and is now back in his room in the PICU. Dr. Fortuna just told us the surgery was a success. He ran into no issues with any of Matthew's arteries or heart function. I asked him to give me a number on a scale of 1 to 10 and he said it was definitely a 10.

The took him off of the ventilator 15 minutes ago and he's breathing on his own now. This is encouraging since it took 5 days to get him off the ventilator after his first surgery. He's still on a high flow oxygen canula.

Now begins the delicate medication tweaking stage. I don't remember if we mentioned this before but along with making his heart more stable the procedure Matthew had today (Bi-directional Glenn) results in a significant increase in blood flow to the head causing very intense headaches lasting 4-7 days. He is clearly in a lot of pain right now so they have to walk a tight rope of giving him enough medication to keep him comfortable and his heart rate and blood pressure down while not giving him too much so that he forgets to breathe on his own.

We're feeling pretty good right now. Thank you so much for your prayers today. Because this is still a very sensitive time Amy and I are going to sleep at the hospital tonight so we can stay close by. We'll continue to give updates throughout the evening.

Love,
Craig & Amy

p. s.
Sorry again for the time between updates. This waiting room is a zoo today.

Surgery Update #3

Sorry for the lack of updates. Sometimes the line for this waiting room computer gets long.

We just heard that Matthew has been taken back to his room. We have no idea how the surgery went yet but the surgeon will be coming to talk to us any minute. We should get to see Matthew within the next 30 minutes.

Thank you for the encouraging comments and prayers. They help so much.

Surgery Update #2

We just received word that Matthew went on the heart lung bypass at 10:50. Apparently since he has already had open heart surgery it takes a while to separate the scar tissue and get access to his heart. So far so good. We were promised another update around 1:15.

Surgery Update #1

A very smiley Matthew was taken into surgery at 7:45 this morning. We just received a report that the first incision was made at 9:00. Surgery is expected to last about 6 hours. We expect to receive our next update sometime around 11:00.