Friday, March 28th

We received some good news this morning!  While we were in the hospital with Matthew, someone from their financial department helped us apply for federal aid for him.  She said the application would be processed faster through her, and would have a better chance of being accepted since they would have access to his medical records.  She wasn’t kidding!  We got a call this morning that Matthew will be covered by state health insurance, and they will pay for everything for the past 3 months as well!  It was incredibly fast, and good timing – we also got the MedStar bill today.   Who knew that being air-lifted would cost more than $15,000.00!  This lifts a huge financial burden off our shoulders.

We had an appt. this morning with Matthew’s pediatrician.  He continues to do well, and received his first set of immunizations today.  He hardly fussed at all with the shots, and was smiling again by the time the nurse was putting on the band-aids.  He’s so tough!

We’ve spend today cleaning, organizing, and taking care of business.  We left in such a hurry that there was a lot waiting to get done here.  It’s really nice that Aaron has this weekend off before heading over to CleElum.  We’re all enjoying being home and having some time together as a family.

Back Home!

Matthew continues to do well and was discharged home today. He will require Nasogastric tube feeds for the next month in order to fatten him up to get ready for his next heart surgery. That surgery is scheduled for May 7th so we have 41/2 wks to get him (and us) ready for the next big adventure. Our goal his to pack on some weight and keep him healthy.

After we left the hospital we packed up and came home to Yakima. It is nice to be back and we will spend the next few days reorganizing the chaos that we left, doing taxes, and taking care of business. Aaron is getting ready to leave for a month away in Cle Elum for a rural medicine rotation. I will make this short because our bed looks pretty inviting after a stressful week of sleeping in hospital rooms.

P.S. We are out of cell phone minutes so if you are trying to get a hold of us use our home phone or call the cell’s after 9 or on weekends for another week or two. 🙂

Just another day in the hospital.

The wet diaper finally came around 2:00am! 

Matthew has been doing really well today.  He hasn’t had any more pain, and he’s been happy and playful all day.  Now, we’re just working on getting him nice and hydrated, and getting all the calories he needs in him.  He eats every 2 hours, and anything he doesn’t take by bottle goes in his NG tube.  So far, he has tolerated everything very well.  We have not seen him smile this much since before this whole mess started.  We’ll spend one more night in the hospital just to be safe, and hopefully be discharged tomorrow.  The NG tube will stay in place for the next 5 weeks, until he has heart surgery.

Micah is doing well and enjoying time with his grandparents.  We are doing a lot of running back and forth to and from the hospital.  He seems to understand that Matthew is sick and that our schedule is crazy for a while.  It will be nice to get us all back home to Yakima soon.  Aaron’s family are dropping like flies to some horrible flu like bug and we need to get out of here before one of us catches it!  We need to be germaphobes for the next month before the surgery.

  Thank you for all your prayers and support.  It means a lot to us.

Rough night, Tough day

We are back in the hospital with Matthew today.

After we were discharged yesterday, he did well for a couple hours, then started to not eat very well.  During the evening and all through the night, he would get very uncomfortable and cry with pain in his belly.  He was eating very minimal amounts, and we could tell he was getting dehydrated because he stopped making tears and hadn’t had a single wet diaper since we’d been home.

So, this morning we headed back to the hospital with him.  He started to eat better all on his own, and the pain seems to be nearly gone.  But, he was still dehydrated, so they placed an NG tube and are feeding him Pedialyte through that.  As soon as we get a wet diaper, they will change the Pedialyte to formula – but it’s 8:00pm and still no wet diaper.  The Pedialyte has been going since about 4:30.  He evidently was more dehydrated than we thought.

There was a very good chance that Matthew would need an NG tube placed anyway in order for him to gain enough weight for surgery.  We have to feed him more than he usually eats in order to get enough calories in him.  He needs to be as strong and healthy as possible going into heart surgery!

We’ll spend the night in the hospital tonight, and possibly go home tomorrow.  We’ll take him home with the NG tube in place so that we can feed him with that if necessary.

 I’ve never waited with such anticipation for a wet diaper!

Discharged!

We are out of the hospital, and doing well.  It feels so good to have our family all together again!  We will probably take a day to re-group and relax here at Aaron’s parents’ house, then head back to Yakima on Wednesday.  Aaron has the rest of this week off, then has to start an out-of-town rotation in Cle Elum Monday.

We learned a lot with this surgery that will help us be more prepared for the next one.  We’re very familiar with the hospital now.  🙂  The fact that Matthew did so well with this one – did not have any problems with anesthesia and recovered so quickly – is a good sign that he’ll do well with the next (bigger) surgery.

Again, Thank You to everyone who has been praying for us.  As difficult as this whole situation has been, we have really felt the “peace that passes all understanding.”  We know we are covered in prayer, and we know that those prayers are heard.

Going Home

Matthew did great overnight – he’s eating very well, and it really sounds like they are going to discharge us from the hospital today!

Our family portraits are available to see online now at Holly Perona’s website (click the link to the right).  Click “photography,” then under “client area” enter password: vawterfamily.  She has an amazing talent, and has given our family an incredible, priceless gift with her photography.  Thank You, Holly!

Holding Steady

Happy Easter!

Matthew has held his own today, but has had a little trouble keeping food down.  He doesn’t tolerate any medications by mouth – even tylenol – makes him thow up.  We just have to try to get enough nutrition in him so that he can be strong enough to go home with us. 

We’re getting weary of being in the hospital – eager to get our family all under one roof again.

More Progress

Matthew has continued to improve steadily, and we may even be discharged from the hospital Monday or Tuesday! 

He is keeping his oxygen levels up by himself, and he was taken off the oxygen early this afternoon.  It’s great to not have any tubing on his face anymore, and we can let him use his hands again!  (We had to have them bundled to his sides so he didn’t pull on his tubing.)  He was awake and alert all day today, and was comfortable, playful, and snuggly.  He is eating very well – so well, in fact, that they disconected his IV this evening.  He is now disconnected from everything – just has a few wires on for monitoring vital signs! (He still has a central line in place so they can give him medicine and draw blood without poking him) 

Micah has been very flexible and easy-going through all of this.  There is a great play-room on the peds floor, and he heads right for the “toy room” when we bring him to the hospital.  He seems to understand that Matthew is sick, so Mommy or Daddy needs to stay with him.  We’re thankful that he’s doing so well.

Aaron and I are both exhausted, but hanging in there.  We take turns spending the night with Matthew in the hospital.  Thank You to everyone who continues to pray for our family. 

Progress

Matthew continues to recover remarkably well. He was moved out of the Pediatric ICU late this morning, and is now in an intermediate-care room on the pediatric floor. He has been quite awake and alert today, and he even gave us some smiles and one little giggle this evening.

Goals for today were to possibly start eating and perhaps discontinue his oxygen. Matthew made his first messy diaper after surgery, and his bowel sounds increased – great signs of progress! It means things are moving through his intestines the way they should. He was cut back to only on 1/8 L. of oxygen, and there was some debate about just how high is O2 saturations need to be. For now, that tiny bit is keeping everyone happy (except Matthew – he really wants that tube off his face!) Late this evening the surgeon gave the “o.k.” to start small amounts of clear fluids, and I don’t think any baby has ever enjoyed 2 oz of unflavored pedialyte more. They are considering a trial-run of no oxygen overnight to see how he does.

We also met with the pediatric thoracic surgeon who will be doing Matthew’s heart surgery. Surgery is set for May 7th, and Matthew needs to be as healthy as he can be. Even a mild respiratory virus can be dangerous and will delay the surgery.

The wonderful photographer, Holly Perona, who took pictures of Matthew in the NICU did another family portrait for us last Thursday. She added one of our pictures to her slideshow on her website: www.peronadesigns.com. Click on “photography” and see the slide show, then be sure to click on “giving back” to see a great Matthew smile. The original pictures are still available under “Client Area” password: matthew. She gave us such a priceless gift with these photos, we can’t thank her enough.

Healthiest Baby in PICU

Amy said that Matthew is the healthiest baby in the pediatric ICU this morning. He no longer needs oxygen and all of the tubes will be off of his face soon. He should be moved into a regular room today — his recovery is going more quickly than we anticipated.