Going Home

Matthew is going to be discharged from the hospital today.  He continues to do very well, and they have no reason to keep him here!

His heart rate was a little on the slow side, and his heart sounds were quiter than normal, so he had another echocardiogram today, just to make sure everything was o.k. and to rule out pericardial effusion (fluid build-up around the heart).  I don’t have the official word from the cardiologist yet, but the ultrasound tech said that everything looks great!  He said there is no sign of effusion, and his right heart function and pressures actually look better than on Friday’s ultrasound.  Hurray!

We will stay in Spokane for a few days, just to be safe, but it will be very nice to be out of the hospital so soon.  We never dreamed we would be discharged just 5 days after surgery!

Thanks again for all of the prayers, support, and hugs.  We know it is because of all the prayers that Matthew has done so well.

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Mr. Hungry Pants

We were mentally prepared for another nasogastric tube or even a gastric feeding tube when we came to the hospital for this surgery. He has never been a good eater and we were told that it often takes a child a while to get his appetite back after heart surgery. We have been pleasantly surprised! Matthew has been eating very well. He is taking more now than he was prior to the procedure – he’s eating better than he ever has only 4 days after surgery! It seems that now that his heart is fixed he has more energy for feeding! Our hopes are up that we can be done with tube feedings.

Mother’s Day and our 6 yr anniversary has been a little unorthodox this year but we have had some time together and will make plans for a getaway for the two of us when things calm down in the future.

If everything continues to go well tonight and tomorrow then the doctors may discharge him tomorrow. We will stick around in Spokane for a few days just to be on the safe side before returning to Yakima. We will update everyone again tomorrow. Good night!

Aaron

Mother’s Day

Matthew is doing really well.  He had a great afternoon yesterday – feeling good, eating really well, and enjoying some visits from friends and family.

He did the strangest thing yesterday, though – something that I can only remember him doing a few times in his lifetime, and every time it has caught me off-guard and surprised me.  He cried because he was hungry!  It took me a while to figure out what was wrong, because he had eaten well only 2 hours before!  I realize that when most babies become fussy, feeding them is one of the first things their mothers try.  But, with Matthew, we have had to coax him to eat, calculating every calorie to make sure he is getting enough, and tube-feeding what he won’t take from the bottle.  He’s never hungry!  Anyway, it is a great sign of recovery, and a great sign that we may not need to tube feed anymore!!!  Hurray!!!!

The night was very much interrupted with breathing treatments every 2 hours in addition to the regular hospital interruptions.  Neither Matthew nor I got much sleep, but Matthew did very well medically.

He’s still eating very well, and it looks like we’ll be done with the hospital very soon.  The doctor hasn’t made it around to see him yet today, but we’ll see what this morning’s chest X-ray looks like and see what he says.

It is very much a Blessed Mother’s Day/Anniversary with Matthew doing so well.  We never dreamed he would be nearly ready to be released from the hospital only 4 days after surgery!!

Discharged from PICU with smiles

Matthew is feeling much better this morning. When I walked in his room, I was greeted with a smile and Matthew’s signature “happy sqirm.”  As my dad says, “Matthew smiles with his whole body!”  He had a really good night, and they were able to take him off the oxygen completely!  He is O2 sats rage from about 92-99% on room air right now.  He really likes having all the tubes off his face, too!  We’re discharged from the PICU and on the intermediate pediatric floor now.

We were also able to talk with Dr. Anderson (cardiologist) this morning, and learned that we didn’t quite get the correct information from his nurse last night.  His echocardiogram yesterday actually showed a moderate amount of right heart failure with increased pressures in the pulmonary arteries and some pulmonary hypertension with pulmonary edema, and enlargement of the liver.  His repair looks good, but he does have some tricuspid regurgitation.  His left heart is doing just fine.

In non-medical terms, this means that the right side of his heart, which pumps blood to his lungs, is not working as well as it should.  This causes lung problems, and causes fluid build-up all over the body.  The patches with his heart repair look really good, but he has one leaky valve.  It was expected due to the complexity of the valve repair, and it should not cause any major problems.

Dr. Anderson said that it is not uncommon for kids with Down Syndrome to have some pulmonary hypertension, even without heart problems.  Right now they will treat it with diuretic medication and digoxin.

When Dr. Anderson looked at Matthew this morning, he said he was much improved from yesterday – he was breathing easier, his liver has already gotten a bit smaller, and his O2 sats were good on room air.  He said he would expect that if they did another echocardiogram today, it would already show significant improvement.

His chest X-ray from this morning shows a lot of improvement from yesterday, too.  The collapsed portion of his right lung is opening back up, and he has less fluid on his lungs.

They are talking about letting us go home very soon.  We just need to make sure Matthew is eating well (he’s getting better), and we’ll be able to go home! 

He said the issues of right heart failure and pulmonary hypertension may get better as he recovers, or may be a long-term issue that we have to follow up on.  I told him, “It’s Matthew – he’ll just heal his right heart on his own!”

Dr. Anderson agreed, “I wouldn’t be surprised.  This kid is incredible.”

Echocardiogram report

We just received a call with the report of this afternoon’s echocardiogram.

His repair looks great – the patch and the valves are holding up very well.  His left ventricle is not functioning as well as they had hoped, however.  It is weak, and not pumping the volume of blood it needs to.  They are giving him more diuretic medicine to take water off and ease the work load of the heart.  They are also giving him a medicine (Digoxin) to help his heart beat stronger.

We’ll get more details from the cardiologist tomorrow.  We don’t know if this is something that will improve with time and healing, but we hope so.

Resting comfortably

Matthew had a rough morning, but a restful afternoon and evening today. He looks great, and is able to sleep peacefully now. I spent the afternoon with him today. He woke up for just a little bit, ate 3 oz, then fell back to sleep. He even slept through a percussion breathing treatment.

He still has quite a bit of fluid retention, including water around his lungs, so they stopped his IV fluids to avoid fluid overload. They are also hoping that it will encourage him to eat more on his own. His doctor was very pleased with the amount he ate today, and is quite optimistic that Matthew may not need a feeding tube. He is willing to be patient and wait for Matthew to “ramp up” his feeds on his own, and is hopeful that Matthew’s “new” heart will make eating easier for him once he is recovered.

Matthew only has an oxygen cannula, the IV line (that is not being used right now), and his monitor leads. All of the other tubes and wires came out today (which is the reason we had a traumatic morning). He looks great. His oxygen has been turned up a little bit (to 1/2 L) with the recent lung issues, but that is still not a high level for a guy his size. His chest X-ray has improved a little as well.

We’re going to get some rest tonight – tomorrow we will start taking turns staying in the hospital with Matthew. Once he is on the intermediate floor, one of us needs to be with him 24/7. We don’t mind it, but it can be exhausting.

This web site has had 2,058 hits since Matthew’s surgery.  Thank you for thinking of us that much!  It means a lot to us.  Keep up the prayers!

Bumps in the Road

Matthew continues to do well, although the road to recovery is not always smooth.

His chest X-ray this morning showed that the upper part of his right lung had partially collapsed (atelectesis), and the lung had some fluid around it as well.  They are treating it with more Lasix, and “chest percussion,” which he gets every 2 hours.  The percussion is a type of physical therapy where they basically pound on his chest and back to loosen up any mucus or fluid in the lung.  He needs the therapy, but as you can imagine, it’s not very comforable to have someone pound on your chest only 48 hours after chest surgery.  His nurses have been very good about giving him Morphine prior to the treatments, and he does a lot better with them than I expected.

They also had to remove his central line today, because the line was “migrating,” beginning to come out on its own, and would cause more problems if they left it in place.  It’s good to have one more line out, but now they can not use it to draw labs.  This means that every time he needs blood drawn now, they will have to poke him whereas before they could draw blood from his line without hurting him.  It’s so hard to see him in pain.

They also removed his surgical drain and pacer wires today.  Getting the tubes removed was quite painful for Matthew, but it is one step closer to recovery and going home.  This morning they were talking about releasing him from the PICU this afternoon, but he will spend one more night here to be safe.  Even so, the doctors are all impressed by how well he is doing and at this point anticipate a shorter stay than we had originally thought.  He will most likely be transferred to the intermediate floor tomorrow.

It is really hard for us to see him in pain, but we know that everything is helping his recovery.  We’re looking forward to having him home with us again soon.  Thank you for all your support and encouraging comments.  We will update again soon.