Tuesday, November 21, 2006

Spoke too soon..

Well I spoke too soon about the pump. Night before last it errored about every half hour to hour which woke up em and me and all that nit so fun stuff. It was also pumping more than it should faster than it should. The home health care lady put in a call for a replacement to Apria and they were supposed to call me. NOBODY called, surprise surprise. Unfortunately, I woke up to our refrigerator bein dead and warm yesterday so I had to deal with trying to find a new that we could get by today and couldn't deal with apria. So anyways, We set up her pump last night and it kept having an occluded error, we checked everything, NOTHING was occluded, we even tried changing the bags and no deal. Then it would switch the other error. So annoying. so we laid off the pump and called apria after hours. The drrive had a few more calls then had to go back to the warehouse to get a new pump. He didn't get here until about midnight. so she started her feed a few hours late. This pump is the Kangaroo pet pump, I guess the one before was a slightly larger version. He said this one is for babies. It's actually pretty small and cute but still not the one we want/need so we'll be working on it. Here's for the good news. We got it all set up and after toying with it and a million errors got it working. It ran all night with NO erros, and it delivered the right amount of formula in the right amount of timie.YIPPEEE. We set Emma and the pump up for the swing hoping it would help her sleep and she slept ALL night. Double Yippee. I unfortunately didn't get to sleep until 2 a.m. and woke up at 7:00 a.m. Still better than before.
Unfortunately, Emma's reflux isn't any better. She doesn't seem to be puking/spitting up as much but more silent refluxing. We can hear it come up and then hear her choke/swallow it down whilst having this nasty look on her face. She was also in quite a bit of pain/discomfort yesterday. Poor baby. Last night I secured her tube in a million places so it wouldn't pull. It looks red/raw last night and I don't want it getting infected so hopefully that will help. She seems to throw up more after bottles. We don't really see her refluxing with the tube feeds. If I thought it was best we would go all tube feeding but I'd really hate her to lose the oral abilities she has. So we'll keep bottle feeding and I guess just dealing with the pain of reflux :(
On a side note, there is a piece at the end of the peg tube which is an attachment to hook the feeding set( tubing, bag etc.) to. There is a little plug which plugs it when not in use. It broke off yesterday so we were using it just not connected to the attachment. this just meant we had to be super careful not to lose it when it wasn't in. Yep, you guessed it. I went to flush her peg out after her feeding last night and couldn't find the darn plug. So I frantically looked with syringe still attached to the tube. No go. So I taped it all up with gauze and called the home health nurse. She was on her way down south and couldn't help but had me call the nicu. Anyways, they had the piece I needed. Hopefully it will fitl. It looks bigger but we'll give it a go! Oh, we did get to see one of our favorite nurses though. :)

Saturday, November 18, 2006

More Pictures from today.

We're Home!

We're home and settled. After making about 20 calls to Apria we finally got the Kangaroo Pet Pump delivered. I'll probably have to call on monday about 20 more times to have them exchange it for the more portable, smaller Zevex enteralite infinity pump. In the meantime her pump is easy to use and will get the job done temporarily. I cleaned her g-tube site tonight and it looks GREAT. It had very little discharge. I placed a new piece of gauze (probably won't after tonight) and got her all set up for her feed. She'll have 30 cc's (1 oz.) an hour for 12 hours overnight. So far so good with NO reflux or spitting up since her surgery. We are SHOCKED and really hoping that this helps her reflux as well. Even more shocking she took 6 1/2 ounces from a bottle from the nurse today. NEVER EVER EVER has she taken more than 4 ounces at a time. Even better NONE of it came up. We are thrilled and really know now this was the right thing to do. Her g.i. doesn't want us overloading her stomach though so we're not to allow her more than 4- 4 1/2 ounces more awhile to give her stomach time to get used to the g-tube and to heal and to stretch a bit more. If she starts refluxing more than we're to offer more by g-tube slowly until she doesn't reflux as much. Anyways, she is so used to having a bottle every half hour at night for comfort and soothing that she is really upset about not having it. I'm sure at this point alot is behavioral as well and it will just take a bit of "training" to get her to go longer at night without waking and to fall asleep without a bottle. In the meantime I feel like a mean mommy. :( Here are some pictures from right before she was discharged and some tonight during her dressing change.

The night went well

Just got home again. emma should be discharged later today hopefully. I'm still dealing with the home health company to get her supplies. Hopefully we'll have them BEFORE she is discharged. She did well overnight. They started her on 15 cc's pedialyte/hour for 3 hours. Then 30 cc's/hour for 3 hours. Than half strength formula 30 cc's/hour for 3 hours. Then full strength 30 cc's/hour for 3 hours. that ends her first overnight continuous feed. She should be back to oral feeds for the day. The doctor did mention we could bolus feed or use the pump to feed as needed throughout the day as well but to try to keep her nippling and taking oral feeds at least 3 times a day. She slept for 2-3 hours at a time last night which is a RECORD for her. I'm hoping we're onto something here and it's not just the morphine. Oh, and even better, no reflux yet with the tube feedings! Hoping that's not just a fluke either. I'm really starting to think we did make the right choice. Hope it continues to go well. Sean and i are doing well. We're tired, emotionally, physically, mentally, but hanging in there. Caden and Lily appear to be doing well and I[''ve showed Caden pictures of Emma's new feeding tube and he understands that is is to help get milk in her tummy and doesn't seem to bothered. He asked if it hurt her and I was honest. I told him that it hurt at first but she got medicine and is now feeling better. He also saw pictures of her smiling and playing with her giraffe toy with the tube in so he seems to be ok. I wanted him to know before he came home since he doesn't do well with things being sprung on him. I'm sure Lily will be just fine as well.

She was so happy when she woke up and saw me this morning :)

Here she is resting peacefully right before I left this morning:

Friday, November 17, 2006

Phew! She has a G-Tube.

Just updating somewhat quickly before I head back to the hospital for the rest of the night. We arrived at the hospital around 9. she was a direct admit into the peds unit, 8west. We settled in quickly and played the hurry up and wait game for the next few hours. They took her vital signs, got her prior medical history and anesthesia history from us and weighed her. She weighed in at 13 lbs. 10 oz. So, she has gained 2 oz. in about 2 1/2 weeks. (Keep in mind she is on 24 calorie formula). Anyways, she had a OR slot for 12:30p.m.

We were taken down to pre-op around 11:30. She hadn't had an I.V. started or anything so we just played the waiting game there as well. We met both anesthesiologists (one really fell in love with Emma) and they explained what they were going to do. They decided with her prior history of having problems being extubated and coming out of anesthesia that they were going to do a modified "conscious sedation". She was put out with gas, but was not administered any narcotics. The procedure was done with a local anesthetic. She was only given a tylenol suppository after the surgery for pain. She was ordered morphine but as far as I know has not been given any. That will change when I get back to the hospital!The procedure itself only took about 20 minutes or so but the lady who fell in love with Emma decided to "drag out" her time in the OR to make sure they wouldn't have any problems. she wanted her FULLY awake before heading to post-op recovery. She did fine with extubation. She had a few "blue spells" where she needed stimulation and they kept her on oxygen until she went into the recovery room about 30 minutes later. Her anethesiologist followed her there and stayed with us another half hour. When she got into post-op they called one of us back so I went while Sean stayed in the waiting room. Emma was quite upset (and hungry) so I rocked her and we made a make-shift pacifier out of a bottle nipple stuffed with gauze and taped. She doesn't take pacifiers but this dipped in glucose water seemed to do the trick. We kept her on "blow-by' oxygen for another 30 minutes. I asked them to bring back sean after about 15 minutes. I was supposed to leave, but I layed low and nobody said anything. After about an hour and a half we got to go back up to her room. We got her all settled in and talked to her doctor a bit about after care. I've done so much research that most of it was just review. We got her content in bed and then Sean and I left so we could go see the kids and grab dinner (Caden was at preschool and Grandpa picked him up and Lily was with Grandpa since last night).
Sean and I had a nice dinner at Woodranch (a good steakhouse) and then met up with Grandpa and the kids. We came home shortly after to put the kids in bed. I have a few things to get together and then I'll be heading back to the hospital. Emma currently has 2 lvns and an RN asssigned to her since she tends to be "high maintenance" while in the hospital so I'll be heading back to relieve them and spend some time with my baby.
On a side note we're having trouble with the Home health care people and coordinating getting a pump. They tried to deliver the WRONG pump last night while we were gone. I called them and they were supposed to call back and never did. Then we spoke with our case manager today who said she ordered the Zevex pump NOT the Kangaroo and said she'd call somebody and to call them tomorrow for it. When we got home Apria had delivered 25 pump bags for the kangaroo pump and left them on our doorstep. UGGH. I hate dealing with Apria. This is the same company who took 5 months to pick up a breastpump and couldn't seem to show up after schedule MORE than 6 pick-up dates. This should be interesting. Her G-tube looks great along with the site.
Here's a link to some pictures from today. Hopefully, it works!

Thursday, November 16, 2006

It's actually happening!

The home health people just called. They'll be delivering Emma's Feeding pump tonight (kangaroo pet pump), bags, and supplies. I guess we'll have to get a prescription and jump through hoops to get the zevex enteralite (more portable, smaller pump). YIKES. It's actually happening. I'm choking back tears as I write this. I KNOW this is the right thing for her (getting the g-tube) and up until now I've been okay with it, but I guess I'm getting those last minute jitters, 3 people from the hospital have called and the home health people have called twice. I don't think I've been this nervous for her since she was born!

Wednesday, November 15, 2006

Quick Update

Just a quick update. Emma had her 2nd synagis (rsv) shot for the season yesterday. This also meant she got weighed again. she's still holding steady at 13 lbs. 8 oz. she's been the same weight for just about 2 weeks. This isn't good but it's better than losing. I spoke with the G.I. , Dr. Duh (Said Do, not duh) LOL. Anyways, she will be a direct admit into the peds unit at Bellflower hospital. We're supposed to meet him there at 9 a.m. He said he'll be there to do that and to coordinate her care. He also said that he'll "put her name in the hat" so to speak to see what time he can get her into the OR. The procedure itself should only last 20 minutes or so, but the anesthesia and recovery will take longer. We're hoping to have her home sometime Saturday and he seemed eager to make this happen as well. We were not too fond of this hospital or the staff so I'm a bit anxious about it. Pray that everything goes fine and there are no complications. Pray that we also get the mini-portable pump we want andd that everything goes through fine with that.

On a side note the kids got a bunkbed and we're all loving it!!!

Saturday, November 11, 2006

G-tube Surgery!!!

Well, we got the date for the g-tube surgery. She will be admitted on Friday the 17th. We don't know what time it will be yet, we should know early this coming week. Pray that nothing happens which would make it be cancelled and pray everything goes well with it. She will be having this done endoscopically. The doctor felt that she would probably be ready to have the g-tube removed around 2. If it happens before than great but that's what we're aiming for. We also discussed when she will go from the peg tube (long catheter type tube) to a button (flush against the skin, button, much like ones used on beach balls. LOL). He said he likes to wait about 12 weeks. While I'm not thrilled about waiting that long I trust his judgement. We also discussed pumps. I let him know I wanted the Zevex enteralite infinity or just enteralit as they are both more portable than Kangaroo pumps. He said he's pulled some strings before and that I can talk with the case manager and hopefully we can get that. YAY. She will probably only be in the hospital for a little over 24 hours and then will come home. With my nursing experience I feel comfortable with this.

On a happy note, we went to "A day out with Thomas" today for the 2nd year in a row. It was quite cold by the time we got there and we had the last run with Thomas. Lily was cranky most of the time. Caden somehow managed to break part of the stroller :( and while riding Thomas Lily threw her shoe out the window of the train!!! So while the kids enjoyed themselves I was a wreck. Sorta. LOL. Caden had a blast and can't wait to go back next year. We ended up driving down a maze of roads and found the general area she threw it out at and Nick (father in law) jumped out and went searching. Luckily, we all got a good mental picture of the buildings around it considering we were at least 3-4 miles or more from where the Thomas event was held.

We're hoping for a lazy day tomorrow. Depending on how well Emma sleeps we may even make it to church. Here's hoping. Otherwise, it's cleaning, cleaning, relaxing, and more cleaning.

Tuesday, November 07, 2006

Yay, just colds!

Well, just got back from the pediatricians. The girls both have "really bad colds". Lily has a small "viral rash" on her forehead. She is more miserable than Emma. Good news, since concentrating Em's formula to 24 cals/oz. she has gained 6 ounces. Yipppee. Her g.i. called while at the peds. The Endoscopy showed no inflamation or eos esophagitis. So that's good. Radiology at Lakeview is not comfortable putting a g-tube in a baby Emma's size so she was referred to a doctor over at bellflower. She has an appointment with him on thursday at 2:30. He'll show us the g-tube, go over it, and have us sign consents. She said surgeries are typically scheduled the following week. So sometime next week it should be placed. So, things are moving right along. Hopefully, this will help her gain weight, sleep better, grow better, be happier, etc. Pray for an easy operation (endoscopically) and quick recovery time.

The girls are sick :(

Does it ever end? I'm sure you guys are tired of my whining so if you are don't read any further. Anyways, Emma started getting a runny nose about 4 days ago. I though "Oh, no not again!" But sometimes she'll get it for a day or so from her reflux and nothing. Then, Lily got it. Great, now they both have colds, both have fevers, both are pulling at their ears (possible ear infection, Emma just got done with antibiotics a few weeks ago for one), Emma is projectile vomiting (some with bood in her sleep, could be caused by ear infection). Her reflux is made worse by sickness. Poor Lily wants to be held, rocked, and have her hair brushed off her forehead and comforted and that's all I want to do right now, but then Emma starts in with her non stop screaming, and she's sick too. so I find myself uncomfortably rocking myself in a chair not made for a mama and 2 babies, while emma iponches lily and pulls her hair and Lily pushes Emma away and gets an attitude. ::sigh:: I'm about to give Lily a breathing treatment since she's wheezing pretty badly. They both have appointments at 1:45 and then at 2:00. Hopefully it's just a cold, they won't need antibiotics and my visit to the doctor will be a waste of time. :) We'll see though, Emma always likes to throw us for loops. And when lily's sick she normally is pretty happy go lucky so I know she is REALLY sick if she's moping around, cranky, crying, wanting to be held and just looks so darn pitiful. I have a feeling Caden is bringing home stuff from preschool. The girls are sick but he is fine. Nobody we know has been sick and we haven't really been anywhere for anybody to get sick.

Monday, November 06, 2006

Surgery Date for me.

Well we have my surgery date. 6 days before Christmas!!! Uggh. December 15th will be my pre-op appointment and then December 19th is the big day. It will be at an outpatient facility instead of Lakeview where I wanted it. I'm not too thrilled and actually petrified of this. If it was at Lakeview I would be inpatient and kept at least overnight and given better, more effective drugs. Instead, I'll have the surgery and if all goes well go home within a few hours after surgery with my nose/head packed with gauze and some tylenol with codeine or some other crap that doesn't work. Ughh. Sorry for sounding so pessimistic but I am just NOT happy about this at ALL. The only other date was on the 27th for Lakeview which would have been GREAT but he was already booked. Pray for a cancellation that day so I can fill in that spot. Otherwise, Christmas won't be too fun spent on the couch. The other possible dates were late in January a day before Caden's birthday so that's a no go besides the fact that it seems they don't want me to go that long. So I thought I'd keep everyone updated. I'll try to update as soon as possible after surgery but not sure when that will be. A friend of mine said the recovery is pretty horrendous and that the doctor wasn't lying. So we'll see. Now to work out childcare, my care, etc through Sean, his grandma, sean's dad, possibly my mom, and whoever else volunteers. :)

Emma is doing ok. She is having her formula mixed to 24 calories/oz rather than 20 calories/oz. We have yet to hear from her doctor but I will be calling here shoretly and hopefully she'll be going in for her g0tube relatively soon. sooner rather than later would be great.