Saturday, March 7, 2009

morphine seems to help

Dalton spent the day with Craig while I got away for a little bit. The morphine really helps but Dalton struggles with the pain when they try to reduce the amount. The nurse feels like he should feel a lot better tomorrow. Let's hope for a good night rest tonight and a better/ less pain day tomorrow.

I stepped away from the hospital to see the other kiddos for a bit as well as take them to a birthday party and visit with some old friends. It was nice to see some friendly faces. Happy Birthday William.

I am just blown away by everyone who has emailed prayers, visited, brought us food, sent cards, gifts, etc...Just tonight for dinner a precious family from our church brought us dinner. I had not met them before but they heard about Dalton in choir and wanted to bring us dinner. Dalton asked, "Why would they even bring us dinner when they don't even know us." How happy I am to say they did it because they are brothers and sisters in Christ.

I've also been brought to tears so many times these past weeks with the thoughfulness of friends. I truly appreciate all the love that has been shown not only to my precious little boy but to my entire family. Many heartfelt thanks...

back in room

Dalton's back in the room but even after 4 ml of morphine he's still screaming in pain. Not in his head as you would suspect but from his tummy. I think morphine is his only choice in pain meds as he's allergic to the loritab and codeine. Please pray his stomach stops hurting. I think it's from the incision they make to place the bottom of the shunt?

We just called the nurse because he is still screaming. We get moments where he's fine but then he just starts screaming out again. Wow, didn't expect that. He's getting 3ml of morphine now to see if that helps.

Here he is sporting his new haircut. He usually comes back from surgeries with just a strip of hair missing but as long as his hair was getting, I thought that would look a little funny. Dr. Boop agreed to go ahead and shave it all. He looks so handsome with his new hair doo.

in recovery

Dr. Boop just stopped by and said surgery went well. He's down in recovery now and we're waiting to go down and be with him. We have requested the PICC team to go and redo his central line dressing while he's in recovery (spare him the pain of removing the tape). I am hoping they get that done before we go down there. Dr. Boop said he thinks we should be able to go home Tues. That sounds great! We're definitely ready. Thanks for all your prayers.

in surgery now

Dalton is in surgery now. Will update later.

surgery on again

Surgery scheduled for 7:30-8am. Dalton is the only one scheduled for surgery today so barring an emergency, Dalton will go down this morning for his shunt. I'm praying this surgery goes well and we are able to go home soon. I'm sure Dalton will feel better once he gets to go home and be with brother and sis. I'll try to keep you updated once he actually goes down. Thanks again for the prayers.

Friday, March 6, 2009

Loving visitors

Today was a long day as we waited for surgery. Dalton was starving and kept asking could he eat or at least have something to eat. I hated having to tell him no but I explained why and told him as soon as surgery was over he could have anything he wanted...I'd even send dad out to get it. He brightened up and smiled and asked, "Did that mean McDonald's?"

So once we got the word that surgery was postponed, Craig ran out to get Dalton his happy meal. He was starving! Not only did he eat that, but I went ahead and ordered a lunch tray which we helped him eat. Plus he gobbled down some snacks, then he was already ready for a dinner tray. He's a growing boy.

Luckily we had some visitors today that helped the day not drag on so long. Channing came to visit her brother. Dalton was so excited to see her, it had been a while. I think she liked seeing all the snacks and goodies he'd accumulated and wondered how many she could take home with her. Of course, Dalton was more than willing to share.

Later Dalton's classmate, Luke, stopped by. He read Dalton some Dr. Seuss books and Dalton added a little more sugar to his diet. Luke's reading started to put Dalton to sleep and they had to get going to a basketball game. It was nice to see some more of Dalton's friends.

I think the 2 of us will be calling it an early night. We are tired. Dalton's already cuddled up in his new camouflage blanket from the hospital (hey, where did he disappear to...oh yeah under the camo blanket!)

Surgery rescheduled for tomorrow

Hey guys, Dalton's surgery has been rescheduled for tomorrow. This child's surgery before Dalton's was still going on at 4:00pm. Please pray for that child and that family. I can't imagine what they are feeling. So, Dalton will have surgery tomorrow am. I don't have a time, but he's the only one scheduled for surgery tomorrow. I'll let you guys know when we have a time. He's enjoying some McDonald's. We promised, and he waited patiently. Thanks for the calls and prayers.

surgery delayed

Still haven't gone back for surgery. Dr. Boop is still in surgery with the child with a tumor. I will update if we get another time for our surgery. thanks.

surgery time

Told as of right now today's surgery will take place at 12:30.

surgery today

Dalton had a pretty good night. Before bed the nurse noticed Dalton's shunt had been clamped and asked if it was supposed to be. It wasn't and the only thing we could think of is that the day nurse clamped it when he got up to go to the bathroom and forgot to unclamp it. He didn't complain of a headache, that's good but he did go to bed early last night.

Neurosurgeon fellow and resident were here bright and early this am. Said even though was clamped and tolerated, he drained a lot and just doesn't seem to be reabsorbing the fluid. I figured, I could see the amount drained in the bag. They said Dalton was still on for shunt surgery this afternoon. Not sure exactly what time that means but we're waiting and I'll update you as soon as I hear something.

He's been running a temperature this am so they gave him tylenol (I won't mention where but you can imagine since he's not allowed anything by mouth....) He took it all in stride looking at me like...what in the world! The blood work showed slightly elevated white blood cells but still within normal limits. Not sure why he's running the temp. He's in good spirits and wondering when does he get to eat. Keep those prayers coming.

Thursday, March 5, 2009

shunt tomorrow?

We think Dalton is getting a shunt tomorrow. The neurosurgeon did come in and try to answer some of my questions. Unfortunately, I did get some, "we just don't know." I hate those kind of answers. One question I wanted to know was if this hydrocephalus was in fact due to blood leaking into the CSF from previous surgeries (this is what another on-call neurosurgeon told us as to why she felt Dalton was struggling with hydrocephalus.)

His response was that absolutely no blood got in the CSF on our most recent surgery so that was not the cause. He feels this hydrocephalus was caused by scarring created by this stinkin' staph infection! Arggggggh! I'm just so frustrated as maybe this shunt could have been avoided if somehow....I don't know how to even finish that thought. I know no one purposefully wanted Dalton to get staff infection during surgery but there's got to be some way to prevent this from happening to others!

Thank you to the precious visitors who came to see Dalton. There was one in particular he was very excited to see, his best friend from school De came. When I mentioned De was coming, Dalton's face brightened. I am so thankful his momma brought him down to visit. I know it's not the easiest drive. Mrs. Sherri from Faith came while De was here. Faith has been wonderful sending visitors or calling to check on my little guy. He also had some Bellevue visitors stop in, Mrs. Sherry-good friend of mine and Mrs. Houseal. I hate I missed the sweet visit but my husband had sent me away to get a break from the hospital. That sweet man of mine scheduled me a hair appointment that was so nice. I always feel so much better after I go see Mark to cover my gray and get a new look.

I mentioned we think we're having surgery tomorrow. There are 2 possible reasons it may not happen. 1. Dalton has continually ran a "low grade" temp of 99 but sometimes up to 101. They took blood to rule out any other type of infection.
2. The other possible hold up is that another child will be having brain surgery for a tumor prior to Dalton's surgery. Depending how long that surgery lasts will determine if we are able to have the shunt surgery tomorrow or Saturday. Please pray for this child too. I don't know any info on him or her but I can only imagine what those parents are going through. A brain tumor seems so much worse than this shunt I've been praying for us not to have to get.

On to Sullivan's school today they had a booster-a-thon where kids walked laps etc...for pledges. The maximum number of laps was 35 but not all kids did 35....of course Sullivan did. Sorry to all you who pledged and now owe based on 35 laps. He enjoys walking/running so I wasn't surprised. I am so proud of him for his strong finish!

And now to a special heart felt thanks. Thanks to everyone who are following this blog to pray for my sweet boy. So many people have contacted us or friends to find out what they can do for him. He is such a remarkable little guy who seems to either have a smile or a hug waiting for you right when you need one. Just pray for the doctor's wisdom for the surgery and steady hands during the surgery. We pray for a quick recovery so we can get Dalton home and back to his normal jolly, loving self. Thanks friends for everything....

Never a dull moment

Last night went pretty well. The clamp was left open on the shunt all night so no complaints of headaches. We were just up and down with having to go to the potty every couple of hours. I'll take that over headaches any day.

This morning we did get a little drama though. Right after we walked to the bathroom and Dalton sat down, he was telling me his head hurt when he turned his head. I asked him to show me and point to the pain and when he of the tubes on his shunt came loose and hit the floor in the bathroom, leaking CSF all over the bathroom floor. Sadly I think Dalton and I were the calmest ones in the room. The PCA panicked....called the nurse, she ran down panicked called the charge nurse. All the while, I'm standing there holding the tubing elevated so no more CSF leaked out.

Once Dalton was back in bed, he had to go through the sterile process of getting new tubing on the external shunt. What a way to start the day, and the morning had started off so unremarkable!

Now I'm watching this very unhelpful DVD on hydrocephalus for our surgery scheduled tomorrow at 11:00.

Wednesday, March 4, 2009

Waiting to discuss surgery

Dalton has been unclamped all day today and has done really well. Back to his impulsive self! I'm thinking my in-laws sure were wishing I had given him his ADHD med today while they helped out. He's having a great day. I'm hoping to see Dr. Boop to talk about the shunt surgery scheduled for Friday. We don't have a time yet but I'll post as soon as we have one. Please pray this is the surgery he needs to help with the headaches and that there are no complications. I'd love to hold the surgery off even longer; however, it's not fair to keep him in pain if we're ultimately leading to the same fate.

On a different note....Sullivan is a little concerned that Dalton is getting all the face time on the blog so....... Sullivan is preparing for his violin graduation in May. He just played his graduation solo for judges on Sat. and we are awaiting his scores. He has become a very good little musician though he's ready to call it quits with the violin and ready to try his hand at another instrument. His track season is getting ready to start and he's very excited about trying this new sport. His first practice was last night in the freezing cold and he loved it. He said he even ran an extra lap at the end of practice. I'm very proud of him.

Clamp and see

Overnight, Dalton's external shunt stayed open but raised to 20 cm. He seemed to tolerate ok as he didn't complain of any headaches, and his heart rate stayed steady. He was difficult to wake at times and usually he's not a very good sleeper here in the hospital. This makes me think that maybe he's not really tolerating the raised external shunt all that well either.

Of course, at 6 am the neurosurgeon team comes in to do their rounds. Did I mention I'm not a morning person? I tried to wake up b/c I only get a few seconds before they move on. They asked how Dalton did overnight and all I could get out that early was he didn't have any headaches. They felt that was a good sign, clamped him and left.

30 minutes after being clamped, Dalton started complaining of a headache. He woke up for just enough time to eat half a banana, attempt to watch a cartoon, another complaint of a headache and then back to sleep.

Dr. Boop just walked in and checked Dalton's pressure. Felt it was high and recommended we go ahead with the shunt surgery. I don't want to continue to torture him with the headaches if ultimately we are going to have to get a shunt anyway. I can tell he's not tolerating the fluid build up so I think it's time.

So, we are scheduled for a shunt on Friday. Pray for peace. I can't even say the word shunt without erupting into tears.

Tuesday, March 3, 2009

Tough day

Today was not a good day for Dalton. He couldn't shake the headaches when the external shunt was clamped. I stepped away today so Martia and Jerry Peterson sat with him. They said he ate a good breakfast but beyond that he just slept.

When I got back, the neurosurgeon Dr. Muhlbauer came to see us. He agreed he wanted to wait as long as possible about the permanent shunt but just shook his head discouragingly with the updates on the poor tolerance of the external shunt being clamped. He stated that we were not scheduled for a shunt tomorrow so now I'm completely confused! It truly had me questioning my sanity...did I dream that? No, I did hear that so not sure what changed, but I'm happy that we have a little more time to try to get Dalton's body to reabsorb the CSF. I'll keep you updated.

But the neurosurgeon saga continues....Dr. Boop, our normal neurosurgeon (the one who just got back from Serbia), will be going out of the country again next week. This time he will be in Tel Aviv and unavailable. Yikes....I keep telling myself....God is in control. I know this in my head and in my heart but boy is it hard to give up all the control and just TRUST the Lord completely. Pray for a good night...good fluid headaches. I pray my precious Heavenly Father wraps His arms around my sweet baby boy and keeps him from all this pain.

To shunt or not to shunt

Yesterday was an awesome day for Dalton. We walked around a little bit, he ate very well, we even played with play-doh. Our problems seem to be the worst at night. Around 7pm the headaches started back. It breaks my heart when he screams out in pain and I can't do anything to help fix it. I try but my best efforts aren't enough. He'll wake up from his sleep to yelp in pain every 2-3 min. He did this for about 1 hour until a doctor could make it to his room to unclamp his external shunt and measure the pressure. It measured high, not extremely high I'm told, but high enough that if it doesn't come down, Dalton will be getting a shunt tomorrow.

I am still praying for that miracle. God is in the miracle business and I've even been granted quite a few, so I know they're possible. All that he's been through, I'm sure he's had some miracles but he's in need of another. I'm not sure I've ever met a more giving child. He reminds me so much of my mom. I literally think he'd give you the shirt off his back if you said you needed one.

So, we're still in this wait and see holding pattern. I miss the other kids so much. I wonder what is going through their minds while Dalton and I are away so long. Sullivan seems to be handling it pretty well. I think he's enjoying his play time with Grandma and Grandpa. Channing Gail enjoys playing with them too, but I can tell she's having the hardest time. When she sees me, she holds on tight and doesn't want to let go. As bad as I want to get out of this place, I'd gladly stay a little longer if there was some way to avoid the shunt.

Monday, March 2, 2009

Always wanted to create a blog....

Well, I always wanted to blog but just never had the time. Seems time is all I have these days so here goes. We've been in the hospital since Feb 18. (that was definitely not a Happy b-day for Craig!) Here's a recap:
Dalton started leaking CSF from his incision in his head, so we had to get to the ER. After a CT scan and some stitches we thought we were home free. He was doing so well and ready to go home. We had to stay the night but the next morning looked promising. He had a little cough the neurosurgeon on-call wanted to watch (to make sure the CSF didn't build up again). It did and after draining it, they found MSRA staff infection in his CSF. We started IV antibiotics hoping that would help decrease the fluid build-up but hydrocephalus persisted. A temporary external shunt was put in to help drain the fluid in hopes his body would start reabsorbing the CSF once the infection decreased.
As of today, the headaches/fluid build-up comes back every time they clamp the external shunt. He screams in agony and sometimes vomits from the pain. We are scheduled for a permanent shunt for this Wed. but I am praying for a miracle. I am scared of all the complications that can be seen from a shunt....