Wednesday, February 25, 2009

Going home

Matthew says thank you for all the prayers. This afternoon he is feeling pretty good and we're ready to go home. He was in such a good mood this afternoon!

This is my 100th post. I was so hoping to do something special for my 100th post, but maybe I'll save it for my 101th! We're ready to go home and stay home!

Tuesday, February 24, 2009

Surgery is done!

Matthew came out of surgery with flying colors. His g-button is in and looks good. He, however is OUT OF IT! He is sleeping well, and that is good. They are not going to let him have anything to eat until at least tomorrow morning. So, I'm hoping, for my sanity, that he sleeps, because I don't do well with crying babies (especially my own).

If all goes well he'll be able to eat tomorrow and maybe home tomorrow afternoon/evening. They will be using his button for his meds tonight and that is it.

Another good thing. Because he is admitted under the surgeon instead of the hospitalist we won't have all the residents rounding like we normally do. Sigh of relief for me! We'll just have the surgeon and surgery resident rounding. (When we've been here in the past we get 3 pediatric residents that all round at separate times, the hospitalist, the neurology resident, the neurologist, the neurosurgery resident and the neurosurgeon all rounding on Matthew. His room is a revolving door. So I'm hoping this will be better, cross your fingers)

Thanks for all your prayers!! I'll keep you all updated as well as I can!

Monday, February 23, 2009

Matthew's 9 month well-child check up

Matthew had his 9 month appointment today. It's so funny to remember how I was so excited with the other kids to go to these visits. So excited to see how big they were and brag about all that they were doing. Now, I actually dread them and consider cancelling right up to the hour I go. I get sick of the nurses asking, "is he __________ (insert any developmental milestone a baby of 9 months should be doing, sitting up, rolling over, etc)" and I continually answer 'no'. How frustrating. And, today they had me fill out this 2 page form on developmental things to which I got to check the "not yet" box on EVERY single question. I was in tears by the end of the paper. When I gave it to Matthew's doctor, she looked at it and said, "oh, I'm sorry; the front desk shouldn't have given this to you". I looked at her and said "Yeah, that was a tough one." I think she genuinely felt bad, but oh that put me over the top. And big surprise, Matthew hasn't gained any weight. He's was 15 lbs 4 oz. He's been in the high 14 to low 15 pounds since November. He was 26 1/4 inches long and head circumference was 47 cm's. So He's gained only 6 lbs and grown 5 inches in 9 months.

Tuesday at 1:30 Matthew has his g-button surgery. I'm less than excited about it, but I'm hoping it's for the best. It kills me to think about sending my baby off to surgery AGAIN. I'm emotionally drained, so I'm probably making a bigger deal out of it than it really is. We really just don't have anywhere to go other than a button. The NG tube irritates his throat and he won't take his medications; plus he's not gaining any weight. I guess we know it's time. I wouldn't have made the decision otherwise. Hopefully, bearing no complications, we'll be home Wednesday. I am ready to stay far, far away from the hospital.

Time for me to head off to bed, it's going to be a busy day!

Tuesday, February 17, 2009

Back home again....GRRRR!

Matthew had his upper GI today at 8am today..thank you for your prayers.. the upper GI was completely normal! No refluxing, no aspirating! So that was perfect! We were back in our room by 8:45. We were told the pediatric surgeon would be up in a couple of hours. The residents and hospitalist rounded around 10:45. After they went through what had happened throughout the day before, the pediatric resident said that she had talked to the surgeon and he had said that he would not be coming to see us today and that we could make an appointment in his office to see him either on Wednesday at 3pm or keep our appointment on Friday. WHAT???!!!! You gotta be kidding me! He said we weren't emergent enough to see us in the hospital. That's funny,how would he know?.. he never saw us! Matthew's pediatrician, who sent us in, thought it was emergent enough. Hmm...funny. The hospitalist said it would be fine for us to spend us the night and then they would discharge us tomorrow right before the appointment. I thought, that's crazy. Staying here would only save us a trip to Omaha. There is nothing they would be doing for us that we don't do at home and it would be one more night away from my family and one more night that Steve would have to run solo. I do have three other kids at home. I think doctors forget that. Oh, I was a bit frustrated!!! I said, no thank you, we'll go home! And I'll keep that appointment on Friday. The stubbornness came out in me. I already had a different appointment on Wednesday at 3pm and even though we could've cancelled that appointment and drove back to Omaha tomorrow, I wasn't going to do it! NO WAY!

So basically, he refused to come see us. How rude!

I did talk to Matthew's pedi this afternoon and she was less than pleased or happy! She couldn't believe it. She was quite upset; especially since she talked to the doctors beforehand and they told her to send us up. What a wasted trip. It's too bad they're the only group of pediatric surgeons in town. If there was another group close, I'd get Matthew's records and go elsewhere. But, alas, there is only one group. And they know it, they have us right where they want us! We follow THEIR rules.

So, we'll see the doctor Friday and THEN we'll get to schedule surgery. So maybe next week he'll have surgery...maybe

Monday, February 16, 2009

2nd verse....same as the first

So..... we found our way to the hospital again. :( Matthew still is not tolerating his NG tube very well. Friday, we ended up pulling his tube and giving him a break for the day. Sunday night, he vomited in the middle of the night and his tube came out with it. It was a bit of a panicky moment, because when I woke up (thank goodness he was in my room) he was gagging. His tube was still dripping formula out but it was in his mouth (sorry if that was TMI- I'm a nurse remember--not much grosses me out). I pulled the tube out as fast as I could. Praise Jesus that the tube went in his mouth when he vomited and not his lungs. That would've been VERY bad. I had talked to his pediatrician Friday and Sunday, and she felt it was necessary for us to go to the hospital. She had talked to Children's on Friday and they felt it was better to wait till Sunday night. When the pediatrician called Children's Sunday night, they thought it would be better to come up Monday morning around 7 am.

We arrived and were admitted. After all the doctors and nurses poked and prodded, they decided it was necessary to do a CT scan since his head measurement was up 1 cm in a month and to consult neurosurgery. I was a bit peeved about that, due to the fact that I know there is nothing wrong with his shunt and that's not why we're here anyway. So we did the CT (which was normal for Matthew) and the neurosurgery resident came to see us. I told him I wasn't concerned about his shunt and he definitely agreed. {Okay, I'm gonna vent a second-sorry} I don't understand why every time we go in to the doctor or hospital for something, they assume something is wrong with his shunt. Seriously, it's frustrating. That's the first thing they go for. I seriously think he could come in with a broken bone and they'd worry about his shunt first. At least our neurosurgeons don't feel that way.

Next they wanted to catheterize him and get a urine sample. WHAT??? WHY?? Matthew has kidney reflux and since we're here, they thought we might as well check it out to see. Okay, he doesn't have a temperature, he's not irritable, he doesn't cry when he urinates, nothing. So, I told them, no thank you! I said they could put a bag on to get a urine sample, but no catheter. Seriously, we're here for a G-button, nothing else! I get very frustrated that I always have to be on the defense. I swear they'd just poke and prod all day if I'd let them.

Matthew's slept all day. Literally awake for a couple of hours. Consequently, he's been not interested in eating. So, I've been trying to coax him to eat, but he hasn't been eating well. No eating equals not peeing. So they talked about an IV, but I asked if we could just give him a feeding in his NG tube; which they were okay with. I don't know quite why he is sleeping today. We did just increase his Keppra last week, which could be causing it, but I'm not sure. Maybe he thinks if he sleeps, they'll leave him alone!

They've planned to do an upper GI ( a test to see if he's refluxing his feedings) tomorrow and then hopefully we'll see the pediatric surgeon tomorrow. (He wasn't in today) It seems a pretty wasted day. They won't schedule surgery until they have the upper GI test done. I just like to get things done. I have other places to be and things to do. It's not that Matthew isn't worth it, because he is; but I wish that they would do things a little more timely. I'm just not one to sit around and wait.

If they don't think they can get surgery scheduled in a timely manner (in my book that would be tomorrow evening or Wednesday) I'm going to ask if we can just go home and then come back on the day of surgery.

Please pray for Matthew's upper GI tomorrow. Pray that he is not refluxing his feedings, because that would mean an additional surgery that they will want to do, and I do not want that additional surgery. It means for a longer recovery and more risk for complications.

I will update tomorrow when I know something.

Saturday, February 14, 2009

Matthew's dedication

Today Matthew was dedicated at church. My parents and brother were here as well as many of our church family.(we missed my brother James and sister-in-law Kim who live in Kentucky)
Matthew's cake

Family Picture

Matthew is Grandma and Grandpa and Uncle Curtis

God bless you Matthew; you truly are a gift from God and promise to teach you all about Jesus and how much he loves you!

Monday, February 9, 2009

Another week!

We had a pretty rough weekend, so we're glad for a new week. For some reason, Matthew's NG tube kept getting plugged, no matter what we did. We went through 6 tubes in 6 days. They are meant to last 30 days. We were at the end of our rope! I finally figured out that if we let his meds soak in water for at least 2 hours, they would go down the tube better. As a consequence to all the tubes-this weekend especially- his throat is really irritated and he is coughing a lot. Coughing makes him gag, so it's not fun times for him. We're hoping this tube stays down a lot longer!

This week will be a busy one for us. We have 8--yes 8---appointments. Matthew sure is a well traveled little man.

The kids are getting excited for Valentines day. Megan decorated her valentines box today and we're getting ready to create our cards tomorrow and Wednesday. Fun times; makes me remember all the fun I had with valentines as a kid.

Steve's keeping busy with his new shop. And he's happy, too, which is a big bonus for me!

Matthew is smiling more to faces; especially if we're close. If I get close to his face; he recognizes me and gives a huge grin. It's so sweet! Melts my heart!

I think his seizures seem to be getting better, too. At least today it seems so. Cross your fingers!

Matthew will be dedicated at our church Saturday. We're looking forward to a nice quiet weekend.

Wednesday, February 4, 2009


I recieved this poem from a friend in a card yesterday. I thought I would share it. Grab your kleenex box. I needed mine!


A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,

Tuesday, February 3, 2009

Back home

See, told ya it'd be a quick trip. It took longer for all the necessary people to come see us than anything else.

So this afternoon, home health will be coming to set up his pump to give him some extra calories at night (we're going to see if we can fatten' him up a bit) and then I'll be able to give his meds down his tube from now on. (at least for a couple of weeks or so) We're going to give him a break on his baby food through today and then it's back in the saddle again; but we're going to concentrate on using fun things to stimulate his idea of eating; not yucky medicine.

The NG tube is not a scary thing at all. It is a relief for me. I don't have to stress about medications which is SOO great! And hopefully this'll be the umph we need to get him better!! I'm so ready!

Monday, February 2, 2009

Quick trip

Matthew has not been taking his medications well at all; especially in the last 4 or 5 days. He used to get them in his bottle, but at 6 months, I think he got a good taste of them in his bottle and has refused a bottle ever since. He was doing fairly well with solids- taking 2 or so tablespoons of food, so we decided to add his meds to his food. Well now, he won't let us put ANYTHING in his mouth (except for breastfeeding, that is. He has figured out we can't alter that) and when we do give him his meds, he throws them up; sometimes twice. So last night, I was at my wits end! I was SOOOO frustrated. I promised myself I would call his pediatrician in the morning. When I talked to the nurse, she immediately got us in. After weighing him, we found out he hasn't gained any weight in 2 months and has acutally lost almost a pound. We talked about our options and decided on a long term NG tube to see if we could keep meds out of his mouth and then try to work really hard on his oral aversion and to try to give him some extra calories. We don't know if he hasn't grown because he has low growth hormone or what. He's breastfeeding beautifully; just not eating baby food. So, she actually wanted to admit us overnight to make sure he would tolerate the NG and to start giving him feeds through the NG. I know we'll leave it in for awhile to see if we can get him to eat baby food again and mainly just use the tube for meds. He may get some extra calories at night to see if that helps his weight. We also see Dr. Lutz (metabolic physician) next week, so see if he thinks if something else is causing his non weight gain (I think so, since he nurses so well.) Anyway, it'll be a quick stay- I put his NG down myself so that the nurse could see I could do it myself at home. I put NG tubes down every day at work, so it's not a problem. It was easier for me to put an NG down than force him to take his meds. The nurse was suprised I didn't have a problem; and said that she thought I couldv'e gone home tonight. Oh well, we'll be outta here tomorrow morning!