02.13.12

Hannah smiled today! I also got one of her almost laughs. This came back to bite me because I was so excited that I got her all wound up playing this evening and she didn't want to go to sleep:)

Hannah's white blood cell count did not go down today, but after an ultrasound this afternoon they did determine that it's not high because of extra fluid pockets still sitting in her belly. Good and bad- good there are no visible issues, bad there is nothing to explain the white counts. I think they will wait until tomorrow evening to try and draw blood again to give more time for this to change.

We started bolus feeds today and she's handling them beautifully. The last one was a bit too fast for the increased volume, but we will just back off from there and increase more slowly now that we've got a good gauge on what she can handle.

I did unhook all of Hannah's monitoring lines today and walk with her a bit and play with her out of the crib. I think she liked it almost as much as I did:) 

02.12.13

No news is good news. 

Thankfully, I have very little to share tonight. Today was a relatively quiet day- the only heartache being that we had to move another IV. The PTN and lipids are just so hard on veins that they do not last long after running nutrition through them. We were able to get enough formula through the G-tube today (and Hannah handled it well) that we cut off the nutrition and will supplement with fluids until she's up to enough through the G-tube to meet nutrition needs. 

Tomorrow we will try a bolus feed (cut off the continuous feeds for three hours and try to do an all-at-one-time feed). If this goes well, we will just keep increasing until we think it's too much. If we can hit goal, we can ditch the IV all together! This morning the surgeon suggested that we try to do continuous feeds overnight at home until Hannah's stomach is big enough to handle larger amounts. When we went home with the new G-tube the first time, I was getting up 3 times a night. It took a bit of a toll, but this time would be even more often than that. I'm thinking that pump feeding at night might be the best option just until we would be back down to 2-3 feeds a night.

Tomorrow morning will be the last (fingers crossed) blood draw to check white blood cell levels. If it's gone down, that means that we won't have to worry as much about infection getting worse. We haven't had a fever since yesterday!

Things are getting better. Tonight should be our best night yet for sleep- with less lines hooked up, we will have fewer alarms dinging. Hannah has already crashed for the night- the first night in a long time that she has been comfortable enough that I could rock her to sleep. No sweet smiles yet today, but I have a good feeling about tomorrow:)

02.11.13

Bad News:

This afternoon I noticed that the IV in Hannah's hand was pulled out enough to see a bit of the white piece that should be in her hand. It was not working quite right, and a bit of her fluids had swelled into her hand. So, we got a new IV in one of her feet. 

This evening, I also noticed that the IV in her arm was swollen above the gauze wrap. The nurse called up the IV team and while they were checking it, blood started to leak from the insertion sight. Because Hannah can now take food through the G-tube, we were able to pull that IV and not replace it. However, this IV was used for nutrition- lipids and TPN. This kind of nutrition is generally put through a PICC line, not an IV for an extended amount of time because it can be hard on veins. If leaked into musculature, it can deteriorate muscle. Because there is a chance that Hannah's vein leaked inside her arm, she has to have an antibiotic injected under her skin in a circle formation around the area where it might have leaked into her muscle. The antibiotic will draw out anything that leaked. 


Good News: 

Hannah is much happier. Almost. She has started a very low flow of pedialyte and was just switched to formula for overnight. It will continue to be a slow process, it's important not to overwhelm her sleepy bowels. We are though, headed in the right direction. 

More Good News:

As long as the IV in her foot holds up, it should be the last one she'll need. We still have a few blood draws ahead, but no more IV insertions! We went from 6am to 8pm without morphine, and we are sticking with tylenol and motrin when needed:) 

Even More Good News: 

We are one day closer to coming home!

The Best News:

Psalm 23:1-4:  The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the strength of my salvation, and my stronghold.

02.11.13

WE HAVE A POOP! Doctors are making rounds now, but we should not need a PICC line and may even be able to start a very low flow of food tonight or into tomorrow:) Hannah's weight this morning was not as bad as I thought it would be-we may even come out about the same as when we entered after ditching the rest of this extra fluid and starting some real food. 

Hannah is getting back to her old self. Overnight we were able to go about 2.5 hours between each morphine dose and today we are up to about 3.5 hours. Her eyes have been open and attentive, and she is trying to get after her favorite toys. The next few days should be relaxing. Thanks to Libby I have a stack of chick flicks to watch, I've got a good book to finish, and most importantly, I've got a happy baby to play with:)

02.10.13

Top three from today:

1. Hannah was having some erratic breathing that scared the pants off me. I didn't scream for a nurse, but was pretty close. I've seen her struggle some to take a breath after being sedated, but this was different as she was just not really trying to take a breath. Evidently, this is not uncommon with a constant narcotic drip like what Hannah has had the past day. We stopped the low flow drip and are now only doing larger morphine doses, but we have been able to spread these out to 1 and even 2.5 hours apart today. This is so hard to do because of the fine line between wanting Hannah to be comfortable and able to rest vs. a constant stream of narcotics. Tomorrow should be better pain wise, so I'm hoping to continue this lower dosing.

2. We are REALLY hoping for a bowel movement tonight/tomorrow morning. When you are sedated, your bowels sort of shut down and they have to wake up before it's able to process anything. Unfortunately, there's no way to jump start this process, it just has to happen on its own. Right now, Hannah is shut down. If she doesn't start to rumble a bit, we are looking at having a PICC line placed tomorrow evening. This would mean being able to ditch the other two IV lines she's got, but for the negative trade of a line running through an arm vein directly to a large vein just outside of her heart. This would be able to provide enough nutrition to keep her going until her bowels wake up.

3. Dustin, Libby, and Charlie came to visit and my mom came with Eli this weekend:) It's nice to have some outside in after a few days of bad news in a compact room. Hannah recognizes her brother's voice. It melts my heart.

02.09.13

So, while the Nissen band surgery looked like it went really well, it in fact, did not. At some point, either during the replacement of the G-tube or in recovery, Hannah's G-tube was knocked crooked. On Thursday after surgery, nurses started a very slow continuous feed that lasted for the following 24 hours. Because the tube was crooked, everything (food and all of her pain meds) was dumping outside of her stomach into her belly cavity. 

All of Thursday into Friday, Hannah was miserable. By Friday late afternoon, her belly began to swell and she was in even worse pain. The surgeon decided to sedate Hannah again and drain what they could out of her belly (about 17 oz. fluid). What they couldn't remove, they washed with saline solution and drained a final time. 

Recovery was very long. Hannah woke up fine, but was in a lot of pain. Her heart rate continued at a high level and pain meds were not helping. After many doses of different narcotics, we were moved back upstairs for the night. Unfortunately, Hannah was not only in pain, but everything she should have been eating, she wasn't, and all of her post-surgery pain meds from the previous 24 hours had done nothing. 

We did get an hour of sleep during the night and an hour this morning. Several attempts were made at pain management, and we have finally got a decent system in place. The every-hour morphine doses were too far apart so Hannah is now on a constant slow drip of morphine and she can have additional larger doses every ten minutes as needed. Tylenol and an antibiotic help too.

Our greatest issue now is the risk for infection. We will have regular blood draws to check white blood cells and we will keep a close eye on her temperature. She will probably continue to have a decent amount of pain from irritation in her belly. Right now, Hannah can only have IV nutrition, but if things go well, we may be able to start a very slow continuous feed tomorrow evening. IV fluids help her feel nourished, but she's not fooled into thinking its the real thing (I wouldn't either after not eating real food since Wednesday!). We will have to stay probably through Friday for monitoring before an escape home can be planned.

Hannah is now resting. My fingers (and toes) are crossed for a non-eventful night. I may look like a million bucks with two hours rest and no makeup, but Will really needs his beauty sleep:)

02.08.13

Surgery went well! Hannah's procedure lasted about two hours once she was taken back for sedation. There was no need to move or detach/reattach the G-tube, and the doctor only needed to make two small incisions. She woke up much easier this time after sedation than the last time, and was content when we were allowed into the recovery room. Before we were released to our room, the doctor gave Hannah a breathing treatment to help her throat from swelling due to the breathing tube placed during the procedure. It definitely helped her sound better than normal while recovering. 

We made it to our room about noon and had a quiet afternoon. Hannah was doing well until about 5:30 when she began to look and sound uncomfortable. She was just taking tylenol, but was given something stronger to help, though it wasn't as effective as hoped. It was probably the most rough night she's had throughout her stays here. Because of not wanting to overdose Hannah, we finally got pain meds straightened out around 5:30 this morning. 

It looks like we may be here an additional night as Hannah starts to be more comfortable. She also needs to have a bowel movement-the hope is that this will help with relieving some of her belly pain. Right now, Hannah is doped up and more calm. Her heart rate is lower and we are hoping that she continues to enjoy her medicine-induced happiness.