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Thursday, February 21, 2013

02.21.13

YAY! HOME! Hannah is settled in and doing well. Her white count is still too high, but oral antibiotics should take care of the infection that's left. She's on a continuous feed for now and we will slowly ween her into bolus feeds.

We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.

Tuesday, February 19, 2013

02.19.13

The plan- if weather allows- is still to make it home on Thursday. Hannah is about 8 hours into a slow continuous feed, and so far, so good. We will continue slowly increasing overnight and be at goal for a continuous feed by morning. While this is far from goal for a normal bolus feed, it is a step in the right direction, and it's enough for us to head home. 

Tomorrow will be another blood test for a hopefully lower white count and then a probable switch from IV antibiotics to oral antibiotics. If all falls into place, the residents will prepare the discharge paperwork tomorrow night, have it ready for quick overnight updates from Wednesday into Thursday, and send us packing early Thursday.

Now, everyone just cross your fingers that the storm holds out for this mommy to take her baby home!

Monday, February 18, 2013

02.18.13

Good news! No large abscess was found, and Hannah handled the contrast well. Hopes for starting a very slow flow feed tomorrow afternoon. If she can handle it, we might again escape a PICC line and even transition to oral antibiotics. One step closer to home!

I was very lucky to run into a dad that we met from the Ronald McDonald House on our last visit. It's encouraging to hear of other struggles and now that we aren't alone in what sometimes seems an impossible journey. I am blessed to know Rylee and her dad, Larry, and be inspired by their story and motivated by Rylee's beautiful smiles. They are a true testament to seeing God work through people.

02.18.13

Early this morning Hannah was taken down for a picture of her intestines. From what I gather, the picture looks a lot better than it did on Saturday night. However, she's still draining from her stomach and very uncomfortable when the G-tube is clamped shut. 

The doctor in charge of Hannah's team was in this morning to discuss the plan. I asked if these two issues- not processing food and her continued high white count (it is still double what it should be after labs this morning), are related. He thinks that they are directly related, and wants to take another CT of Hannah today. We will inject contrast into Hannah's G-tube so that the CT will show what it needs to. The problem here is that Hannah may not be able to handle that much contrast being poured into her belly. There is a back up option using ultrasound, but it wouldn't not provide a picture quite as accurate as is needed.

Once we can see if there is an abscess hiding somewhere, they may be able to remove it via needle, and not have to perform surgery. Until Hannah can eat though, we are back to inserting a PICC line. Probably tomorrow, we will have that placed and then she can lose the other IV that has been providing her nutrition since Saturday. It is not ideal, but if there is an abscess, if they can remove it, if Hannah can handle feeds over the next few days, and if I can administer IV antibiotics through her PICC line, we may be able to go home later this weekend. I think that it's the week of 'ifs'...

Sunday, February 17, 2013

02.17.13

We will be here a while. Unfortunately, while the spleen infection is out, we are now facing a bowel obstruction. On Friday night, Hannah began to be very uncomfortable. Her belly started to swell and wouldn't go down. By Saturday afternoon, we pulled 450 ml of fluid from inside Hannah's stomach. The good news is that it was not leaking to anywhere else in her body. 

The worst case scenario is that we are looking at another surgery. Tomorrow morning there will be another blood draw to check the white count but we will also have a picture taken to view Hannah's intestinal tract and see where there is any movement happening. Right now, Hannah's tube is connected to vent constantly. Two attempts have been made to close the vent and see how she handles pressure build up- both did not last long. She gets pretty uncomfortable pretty fast. Until tomorrow, the tube will remain vented, the hope being that Hannah's bowels wake up and start to move the blockage through, or that the venting helps release the blockage. Either of these would be a better option that surgery. 

There is no real reason for the blockage, but until Hannah's bowels start to move again, she can't eat regular food. Right now she's on IV fluids again and we are hoping that the vein for this IV continues to hold out. We are running out of viable veins for nutrition. 

Right now, Eli is cuddling with Hannah in her crib and she is grabbing his arm and smiling. She's awake and flapping her arms and legs- let's get the poop flowing!

Thursday, February 14, 2013

02.14.13

-hannah's white counts came back even higher-now they are more than double what they should be.
-she ate well today and they ordered a feeding pump to our house for when we get back home.
-we were rushed into a CT scan tonight before everyone took off for the evening to try and figure out this nasty blood count.
-hannah does not have an abscess or fluid sac causing infection, rather a spleen infection. 
-shouldn't require surgery, but doctors will conference in the morning to decide on plan of action from here. IV meds vs. oral (g-tube) and when we get to go home.
-hannah's snoring away and i'm not far behind her...

02.14.13

Today the doctor sent Hannah's ultrasound off to a pediatric specialist for a second time to  reaffirm that nothing is abnormal in her belly. We may have to head for a CT scan if there is still no explanation for her high white count. It's hard to measure this change in less than 24 hours, so there probably won't be a blood draw until tonight or tomorrow morning. The plan was still to head home tomorrow, although today's findings may prolong that. 

In the meantime, Will and Eli have been taken care of at home. A HUGE thank you to my book club ladies who have been so giving in making meals for the boys this week. I am so grateful to know that they are eating well while I'm away! In fact- maybe too well as they have been spoiled with desserts:) Really, I'm thinking Eli is enjoying his cupcakes and daddy time!


No matter when it happens, we will be home soon. Each day Hannah is happier and more herself, making all of our time here much easier.




Wednesday, February 13, 2013

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:) 

Tuesday, February 12, 2013

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:)

Monday, February 11, 2013

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:)

Sunday, February 10, 2013

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.

Saturday, February 9, 2013

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:)

Friday, February 8, 2013

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.