Monday, February 28, 2011

Out of surgery

After I posted yesterday; Matthew's doctor came through and had spoken again with our surgeon in Omaha. He had felt it best that we come up Sunday afternoon, and get settled so surgery could happen ASAP on Monday.
Surprsingly, Matthhew did not vomit all day Sundaymorning (after a night full of it). This morning surgery came through and said that Matthew's O.R. was scheduled at 2 pm. We had some conversation about the vomiting; and the perplexity of Matthew's case. While he is unable to burp since the last surgery (which is normal), he can vomit. Not major, but it doesn't make sense. His history of vomiting does seem "cyclical" and we talked about that. He also seems to start and stop this cycle without explanation. He does however, seem to be worse when he gets dehydrated. It's a catch 22. The more he vomits, the more dehydated he gets, which makes the vomiting worse, and well, you get the picture.
At 12:30, they came to the room, and said that Matthew's procedure had been moved up and they we were going right away. First, they had to do a MRV (which is an MRI of the veins, essentially) to see how big the clot was that had formed in Matthew's port. Then it was off to surgery to replace it.
They took his port out, and replaced it on the opposite side of his body. The surgeon had a difficult time getting it in, and as a result, the poor little guy has a lot of bruising on his chest. He has been a bit uncomfortable tonight, but has also been flashing smiles too. He is resting comfortably tonight, and they have restarted his feedings. He has not so much as even gagged.
I'm sure we will be talking more tomorrow about what we can do if his GI symptoms stay at bay during this hospitalization, but happen again at home. We can only just take one day at a time, but today, all in all, was a good day.

Sunday, February 27, 2011

Yet again, in the hospital

Yep. Here we sit. In the hospital. AGAIN. Matthew has been struggling with GI issues for the greater part of three weeks. We'd been doing pretty ok at home, and then he got a cold. And a double ear infection. This whole week we struggled to keep enough fluids in his tummy to keep him somewhat hydrated. By Friday it was evident that I was losing the battle. Everything I had put in the last 24 hours came right back out. I hadn't slept more than 2 winks Thursday. We ended up in the ER Friday afternoon. They admitted us. They tried to access his port ( which is a very nice permanent IV access place for him. One poke and you have instantaneous IV access with very little pain.) It wouldn't work. All the fluid they tried to put in went straight in under his skin; which is very painful. They were able to get a peripheral IV in. He actually slept pretty sound Friday night.

I was scheduled to work this weekend; and if I miss my weekends; I get the pleasure of making them up on a weekend i have off; so I try very hard to not miss my weekends. Since Matthew is in the same hospital that I work for, I decided to not call in sick. Weekends are usually slower and I asked to be the 1st to stay home if we weren't busy. I was able yesterday to stay with Matthew until 11 when I was called in and then Steve was able to come up for a few hours with him. The only problem was that we have 2 OTHER sick kids at home. Both Steve and I felt we needed to be in two places at once.

It was decided yesterday what was wrong with his port (via xray) and also decided that we would transfer to Omaha Monday to have it replaced; which means surgery again for Matthew.

The vomiting has not stopped either. Even his medications are not staying down now. We've had two GI docs tell us they are unable to help us. WE don't have the option to give up, though. We have 2 things we want for Matthew; happiness and comfort. We need to get him comfort for the non-stop vomiting, in whatever form we can. So we will be looking into options while we are in the hospital in Omaha.

And for those of you wondering about the surgery he had 6 weeks ago for the vomiting; sadly it isn't working at all anymore. It only worked for about 3 weeks. That is very sad. What looked so promising; didn't last very long.

I am on-call right now for work. I have been scheduled for a 12 hour shift today. So far, they are able to let me stay upstairs with Matthew. I'm thankful; as last night was not restful at all. Matthew without seizure meds, is a non-sleeping Matthew. Non of his seizure medications can be given IV, and thankfully, so far, his seizures aren't crazy right now. We will have to see what comes of this week.

Wednesday, February 16, 2011

New song

I heard a great new song on the radio as I was driving to work the other day. It's a good thing I know my way to work easily, cuz it was a little hard to see through my blurry eyes. The song is by Laura Story, and I absolutely love it. It is not being released until April 12, but you can hear it on the radio. I am not a person who buys lots of CD's, but you can bet I will be shopping for this one ON April 12. Here are the Lyrics: The name of the song is "Blessings"

We pray for blessings, We pray for peace
Comfort for family, Protection while we sleep
We pray for healing, For prosperity
We pray for your mighty hand to ease all suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
And we doubt your goodness, We doubt your love
As if each promise from your Word is not enough

And all the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home…..

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

What if my greatest disappointments,
What if the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

Wednesday, February 9, 2011


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.