Updates

Matthew has kept us on our toes the past few weeks. For the first week home, we worked very hard to tweak Matthew's meds, as he started retching again after we got home. Not having reflux has helped dramatically, but Matthew is very accustomed to retching, and it's a learned behavior for him. So if he gets air in his belly, it makes him retch, and the same with if he has too much saliva in his mouth. We are slowly but surely getting things better for him. Even with the retching he is doing now, he is still way better than before. The surgeon also said that this is a six to seven week recovery. We are only 3 1/2 weeks in, and in that respect, he is doing phenomenal.

We have had a lot of appointments the last couple weeks, trying to catch up with all the appointments we missed due to being in the hospital. The rest of this month will be busy with Dr. appointments, too.

Last week, we saw the eye doctor and the dentist. The eye doctor says his eyes are a bit better and was able to tell that Matthew was tracking on the left side. He says that CVI (the type of visual impairment Matthew has) is difficult to tell how much vision Matthew has. Matthew's eyes are normal; but the way his brain interprets the information is why he is visually impaired. Since he is unable to tell us what he see, we are only guessing what his vision is. The eye doctor told us we don't have to come back for 2 years. 2 YEARS!! One less appointment we have to keep.(leaving his eye appointment, wearing disposable glasses because his eyes were dilated)

His dental appointment was pretty uneventful. He didn't appreciate having anything or anyone in his mouth, but she was quick. We will revisit in 6 months; just like normal.

Today we saw the urologist. He reviewed his kidney ultrasound, and said everything looked wonderful. He said...wait for it.... that we DO NOT HAVE TO COME BACK!! He said that he will send a letter to Matthew's pediatrician to tell her to make sure and do a kidney US with him every year, and if problems arise, he would be glad to see him again. That was wonderful news to us! Matthew has enough doctor appointments and I would love to get rid of a few. We love this urologist too. The first urologist we went to see wanted to put Matthew on all kinds of medication, and run all kinds of tests. The medication he put Matthew on made him unable to empty his bladder (this was when he was a tiny baby...6 months or so) and he wanted me just to cath him the rest of his life. When we took him off the medication, he was fine. The medication was to help lower the pressures in his bladder. Our new urologist, however, said that ALL babies have high pressure bladders, that is why they "go" so frequently. Over time, they learn to control their bladders. And he was right, Matthew has been just fine, and did not need all of that intervention. His only urinary problems have been related to his tethered cord.

I remember when a lot of our hydro friends were so excited about appointments getting fewer and farther between, and was bummed because it wasn't that way for us. I think we are maybe starting to see our reprieve. And boy, does it ever feel good! We want Matthew to live as close to a "normal" life as he can; one that is not spent in hospitals and doctors' offices.

We got an early gift..we are going home today!...like right now!

This is the best way I can describe about how I feel today

Matthew has had an amazing day! He is on his full feedings, he is off his IV pain medication, and off of 1 antibiotic. The other antibiotic he can go home on, since there is an oral version of it. He is not on oxygen, and the pain medications we can give in his g-button seem to be helping him; except for when he coughs; then he is uncomfortable. Matthew is not doing any retching or vomiting. He is happy as a clam (except when he coughs).

I have a completely new little boy!

Things are looking up

Well they said Saturday was going to be the worst day, and I agree with them! Saturday was rough. Lots of crying, and coughing for our little guy. Saturday evening, Steve and the kids came up with me to the hospital, and then I took the kids home with me and Steve stayed Saturday night. I worked Sunday, and my dad came and spent the day with the kids; who, as expected, got spoiled. I heard all about sledding, hot chocolate, and late night ice cream!

Last night I came up and he was sleeping. They have started weaning his morphine; so he is a bit more uncomfortable with coughing, but he is also more alert, and able to cough harder. We have started his feedings again, at 1/2 rate; and so far.........NO RETCHING!! I cannot believe it. I almost don't want to type it to jinx him. So far, the transformation is amazing. He is getting g-tube feeds as the j-tube went "bye-bye" with the surgery.

I believe, so far, we are on track for a Wednesday dismissal. We are ready to go home and stay home!

Evening update

I've gotten Matthew tucked in for the night. He is resting, finally. This afternoon he has been very uncomfortable. We have turned up his morphine twice. Every time he coughs though, he cries out in pain. And then he won't cough hard enough to get what he is coughing out. And so then he gags. It's a vicious cycle. Our night nurse (LOVE HER) says tonight and tomorrow will be the worst. She keeps telling me it will be worth the pain he is going through right now. I hope so. This momma heart is hurting tonight.

Say prayers for our sweet little buddy. We're ready for our Matthew to be back to his old non-vomiting, smiling self.

Surgery today

We saw the surgeon late last Wednesday night and he was in agreement with the surgery to stop the reflux. So much so, that he put him on the surgery calendar for THIS MORNING. None of us could believe it! So we will be going back to surgery in about 40 minutes. We are praying this is the fix for Matthew's vomiting. He still has pneumonia, is running fevers and has a high white count despite being on two very strong antibiotics, so we are nervous about how anesthesia will affect him.

I will try to update later this afternoon/evening when we know how surgery has gone.

1/12/11

I just haven't been in the mood to update the blog. Sorry. It get frustrating and annoying to update "Matthew's still sick" or "Matthews in the hospital". I thought about not even putting anything here; but I've had numerous people who aren't on facebook wonder how we are doing.

Well, Matthew is in the hospital. He's had pneumonia since 12/29. Despite 3 different oral antibiotics at home, he could not kick it. While we doing fine at home, we need to get him well enough so that the doctors can perform a surgery to hopefully stop the vomiting. So our pulmonologist figured it would be best to admit for "a course of IV antibiotics." He said this could be up to 2 weeks. We are then hoping to encourage the surgeon then that this is "as well as he's going to get" and to do the surgery. Without the surgery, he continues to throw up, and aspirate and get pneumonia. This will be a delicate balance in timing.

There will not be dramatic changes here from day to day. We are basically here; watching and waiting. So probably nothing really earth shattering to even blog about. I'm sure I will update when the surgery day is set.