Saturday, March 14, 2009

back in room

Dalton is back in this room. He's alert, drinking sprite, and watching T.V. Such a good sign. He really seems to be feeling better. Thank you for your prayers. I am praying for a good night and good day tomorrow. Not sure when we'll get to go home but I hope soon. Channing is struggling without having mommy around.

in recovery

Waiting to go see Dalton. He's out of surgery but in recovery. The neurosurgeon replaced the end of the shunt as well as the valve. It was working when she went in but was under pressure. There was some debris in the valve. Keep you posted.

in surgery now

Just went into surgery. Will keep you posted.

shunt revision #1

Well, this is not where we thought we would be 1 week post surgery, but it looks like Dalton will be going down shortly (as soon as they can get an OR) for a shunt revision. The theory is the shunt is malfunctioning, may be clogged, and the doctors will need to go in, find the problem and fix it. We don't really have any other options. Dalton still hasn't woken up today and that is very troubling. Please pray for the doctors doing the surgery for a steady hand and wisdom when trying to find out what's going on. This is a new doctor we will be using and I have to trust and release control. Pray for Dalton's safety during the surgery and for a successful revision. We'll keep you posted.

yes, at LeBonheur again

Yes, we are back at LeBonheur. Dalton had been doing really well at home. For some reason, last night Dalton's headaches came back and then he started vomiting. I rushed him here to the ER. Got here around 4am and went through various tests. It appeared the ER nurses were just as dazed as I was to be here.

It took several sticks to draw blood. They then put in and IV and drew blood. Came back later and took blood from central line and then had to come back for more blood. His CT and Xrays didn't show anything new. They drew fluid from the shunt by sticking a needle in his head. It showed a high protein level which can clog the shunts. Don't really know how you fix protein problems. Through all the poking and proding, Dalton never really woke up. Occassionally he would become restless and raise his arm or mumble something but never really awoke (even when they were digging around for a vein.)

Here's my panic. Dr. Boop, our neurosurgeon, is still out of town and won't be back til next week some time. The other Dr. we saw and like, Dr. Muelbauer is out of town, which leaves us with the other dr. I pray we don't have to go in for a surgery with this doctor but have to trust that the Lord is in control and He will take care of my little guy during this time.

I am praying the doctors are able to determine what is going on with Dalton and will treat him effectiviely. Thanks again for your prayers. Your prayers keep me and my family functioning.

Back in the Hospital

This is Craig writing this update. Starting at midnight, Dalton started complaining about his head hurting. Typically, he has done this only when CSF fluid was building up. The installation of the shunt last Saturday was supposed to relieve that pressure on a continual basis. It is well known that shunts malfunction and have to be repaired. It looks like Dalton's is already in need of repair. At 3am, still complaining of his head hurting, he started vomiting. Shannon rushed him to the ER. They are about to go in and manually drain the shunt at the valve location behind his ear. They will have to decide if surgery is needed to fix the shunt. Of course, our favorite neurosurgeron is still out of the country. Looks like they will be admitting him into the hospital. Who knows for how long.

Friday, March 13, 2009

on our own

Last night Dalton's temperature spiked back up to 101.6. We got behind 2 hours on the tylenol when I stepped out to play some volleyball with my sunday school class. When we got home (in-laws sat with Dalton), his body was very warm. We got a dose of tylenol in him as well as a cold towel and the temp started going back down slowly. Thankfully, we were able to make it another night at home.

Would you believe I woke up this morning with pink eye? eye. Oh the joys! I guess it could be worse.

The Peterson 5 are officially on our own. The in-laws packed up and headed out the door this morning. It's time we find a routine that works for us with all 3 kids in tote. Martia had to get back home and refill her prescriptions. They are hoping not to get any calls saying we need them back but will come if we need.

So we're still counting down...3 days down, 25 more to go.

Thursday, March 12, 2009

2 days down....26 more to go

I feel like I have a newborn at home without the excitement of my new bundle of joy. I'm thinking administering the IV antibiotics will get easier as it becomes more routine. Craig has been a great help doing the 7am shift so I can get a little more rest. Grandma and Grandpa are getting ready to head out and leave us on our own. It's gonna get a little harder around here but I think we can do it. You gotta do what you gotta do, right? The Petersons have been a HUGE help and we are going to miss their assistance when they're gone.

Wednesday, March 11, 2009

close call

Yes we are home. It's really great to be home; however, I think I'm getting less sleep and working more now that I'm nurse Shannon. The home health nurse came by last night and trained Craig as well. He tolerated the training very well.

Craig and I both woke up to do the 1:30 am IV dose. We managed pretty well; however, Dalton was running a temperature of 101.3. One tenth degree more and we were to head to the ER. After a cold towel on the head and some tylenol, the temperature started to go down.

Craig seems to function better than I on less sleep. He got up at the 7:30am dose and did it all by himself ( with a few verbal cues). Boy am I tired today but hopefully I'll start functioning better on little sleep. 1 day down, 27 more to go.

Here's what it's like.... 7am give Dalton benedryl, 7:30 clean central line with alcohol wipe, hook up sodium chloride flush, unclamp central line, flush, clamp, prime IV bulb by unclamping then clamp, hook up to central line, unclamp both line and IV bulb...wait 2 hours. 9:30am clamp and unhook Iv bulb, wipe line with alcohol wipe, hook up sodium chloride flush, unclamp, flush, clamp, hook up heparin flush, unclamp flush, clamp. finished
in 3 1/2 hours give benedryl and repeat. ( 1 pm) then again at 7pm and again at 1am. Not a lot of time to sleep.
Anyone want that 1 am shift?

Dalton wanted to visit his friends up at school. We stopped by real quick before our 1 pm IV dose. He was thrilled to see everyone and the hugs were in abundance. The kids in his class gave him high fives and clapped for him. He was glad to be at school. We even stopped in to see his friends in the cafeteria before heading home.

Hopefully no close calls tonight. He's been running a temperature again today but we're going to try an adhere to a Ibprofen-tylenol regimin to try and keep the temps to a minimum. If we can't, back to the ER we go.

Tuesday, March 10, 2009

home at last

Yay we're home. Dalton looks so much better now that we're home. He's in the floor, playing ball, scooting around. He looks so much like his normal self right now. Home health nurse is coming over tonight to reteach the IV antibiotics. I'm hoping Craig handles the demo well so maybe he can help out.

discharge papers

Discharge papers written. Receiving last antibiotic before going home. Was waiting on PT to come but nurse stated PT reported Dalton was back to level of admittance....unfortunately that's not true. Prior to this visit, could ambulate to bathroom independently without braces now max assist. Don't think that's the same level and that's pretty frustrating!

I'm just glad to get to go home. PT did finally come by and after we talked, she does understand he is not back to previous levels. There was no point in her doing therapy because discharge papers are written and there's not really a lot she could add. We are going to follow up with out-patient therapy and check into something called Bioness?

We will be singing as we leave. Yeah... we get to go home!

maybe going home

So why is it that the time change and the 6am rounds for the neurosurgeons doesn't seem to matter to them? I, on the other hand, still find myself awakened from the seemingly (I've just reached my deepest sleep) point, discombobulated, trying to unstick my gooey eyes and speak with a somewhat pleasant tone to answer how was last night.

I know we had a difficult time somewhere in the night, but my brain hasn't quite fired as I search for my notebook with times, details, etc....I planned ahead, I know my brain is quite mush these days so I try to write the important stuff down.

Last night, early this am. Dalton woke up complaining of both a headache and a belly ache. We called for meds but we had to wait for them to come up from pharmacy (about 50 min!) Just ibprofen, not even the big stuff. During that time, Dalton was praying that God would take away his pain and then asking me with his big browns, why God hadn't. All I could eek out from my teary eyes was I don't know, God knows and one day you can ask him.

I told him I wish I could take his pain away and asked if there was anything I could do. He asked me to come snuggle with him and rub his back. Of course I did. After about 30 minutes, the headache went away but he was still grunting in pain from the pain in his belly. He also had developed either a tremor or shaking as his body trembled. He said he was cold so I added another blanket. The trembling continued for about 40-45 min. If we would have been home, I surely would have made the drive back down to Lebonheur ER b/c I had no idea what was going on.

Anyways, the ibprofen came and Dalton was able to calm and go to sleep. I reviewed my notes with the doctors. It's always hard to tell with them what they're thinking. I also threw in that his walking yesterday was worse than the day before even though his pain tolerance seemed to be better yesterday. So, we are looking at still going home today, just a little later this afternoon after PT comes work with him. Not sure that will really do anything except delay the process. I'm surprised the other symptoms didn't really seem to matter much. I'm just hoping if there is an issue that needs to be looked at, we figure it out before we get discharged home.

Now after thinking about the me administering the IV thing, I've done the math and realized....when am I supposed to get anything done and when am I supposed to sleep? I am supposed to give the antibiotic every 6 hours, and it takes 2 hours to infuse. I am thinking Craig is going to have to learn too b/c I don't think I can do every night shift. Yikes.

I guess we'll figure that one out. I'm still stumped home health doesn't do it but anyways...I'm hoping we get out of here so at least I can get some rest in my own bed. I'm tired of "sleeping" on this couch.

Monday, March 9, 2009

calling all nurses (or non wimps)

Great! (with sarcasm) Looks like we're going home tomorrow(and maybe tonight if it gets worked out) on IV antibiotics but here's the kicker...I will be administering the antibiotic, the saline, the heparin.......what! This is crazy. Why is there home health if I'm the one doing all the work? My head is still spinning that I will be the one administering the antibiotics every 6 hours...any nurse out there wanna come supervise and make sure I don't do something detrimental? Yeah, yeah, I hear it's no biggie, I even demonstrated I could do it. The problem isn't that I can or can't (shoot I could do almost anything if needed...scalpel please....) but this is something I am not crazy about doing at all.

Changing the subject, Dalton had a really good day today. So far, I've been able to bypass morphine with Ibprofen and naps. Dalton worked on standing and sitting with OT and PT. He won't be able to walk until we get something done with his braces. Currently his braces fit around his waist (where his incision is). I'm trying to see if we can get them unattached from the metal rod so he can wear just the DAFO part.

We tried to play Wheel of Fortune through the Lebonheur channel but I found there were some 12 and 13 year olds much better at the game than I was. Poor Dalton didn't have a chance. He enjoyed calling in and hearing his voice on the t.v. while he made a letter guess. That was pretty cool. Later he and I travelled down to the lobby for a scrapbooking activity. We got our picture made and decorated a page. It turned out pretty sweet. He did a great job and we enjoyed just being out of the room. So, looks like we'll be heading home tomorrow. Yay.

getting closer

Dalton had a pretty good night. Only 1 dose of morphine, the rest of the pain complaints were treated with Ibprofen. He's a tough little guy!

Dr. Boop came in this morning and asked if we were ready to go home. Ahhhh, of course! But then I later realized, I think he meant like today! Ok, I really want to go home but I don't want to rush anything and end back here in the ER, we just had surgery Saturday! The nurse informed the doctor we are still on morphine, so we can't go home yet. Dalton has to be off the morphine before we can go home. We are going to try to make it all day on Ibprofen alone.

The hospital has some fun things scheduled today so we're going to try and participate in some of those. Looks like Dalton and I will be travelling downstairs today to try and make a scrapbook. Fun times, you know how he loves art projects! Hopefully that goes well. I'm hoping to get him some ibprofen right before we go.

Praying we go home soon but when Dalton's ready not any earlier.

Sunday, March 8, 2009

good day

Dalton had a pretty good day today. He had some pain but nothing unbearable. He used the morphine very minimally and one of his biggest complaints was itching. He was supposed to get up and walk around today but he wasn't feeling that good. He was able to walk to the bathroom but that was it.

His face lit up when brother and sis came to visit. Sullivan showed Dalton the get well cards his 1st grade classmates made. We found the disposable stethoscopes the nurses used when Dalton was in "isolation." The kids enjoyed playing doctor even though it seems Grandpa doesn't have a heart beat. I'm hoping we can take these stethoscopes home since they'll probably throw them away anyways.

Dalton also had another visitor today, Tim and Janice from the PTA and good friends, came by to cheer him up. They came with a Dr. Seuss cat in the hat and a book. Dalton was seen laughing while Janice read to him from his new book "I Can Read With My Eyes Shut." We had a good visit with friends and now Dalton is ready to call it a night. Tomorrow we'll shoot for more getting out of bed and walking.

feeling a little better

Dalton had a somewhat difficult night. Don't get me wrong, we've had worse. Last night, his biggest problem was throwing up any oral medications he received. This happened twice and of course, when that happened his stomach hurt. Today he's in pretty good spirits even posing for the camera a little this am. I am hopeful we are going to have a good day.

I am sitting here just loving the sweet bracelet my friends at Sycamore View Church of Christ gave me last night. They are a bunch of super sweet ladies I have the privilege of working with during their kids consignment sale. I went last night to pick up my clothes and check and the committee girls presented me with this precious gift and prayed over me and my family. Absolutely a precious group of girls I am thankful to have in my life....even if I do only see them 2xs per year during their clothing sales. It really meant a lot. Thanks ladies.

The neurosurgeon came in this am and said, everything looked good. He feels like the vomiting was just a reaction to him taking the meds. He wants Dalton up out of bed today. I'm thinking that sounds optimistic but I'll definitely try. Dalton wants to get home by Tues. as well so we'll give it a good try.