Breathing

I think, and I say this in a whisper, I think we are doing well. It seemed to take a long time to settle in to this new routine, but yesterday was finally better.

Emily is still tired and weak, but otherwise, doing well. I was able to change home health equipment companies yesterday and got a new pump. That helped so much. That entire situation was a nightmare! It has caused a lot of problem for Emily, but that should resolve now.

Em has been slow to gain weight, but she's not losing, so we'll take it.

Sarah is having an awesome time, Hannah is still job hunting, and Jeff and I are slowly getting back to our own crazy normal.


Thanks for praying for, and with us. Please continue to pray that Em would be ready for school in a few weeks, and she's scheduled for a dental under anesthesia the 22nd, so we hope she's ready for that.



 

Spell check

I'm sorry for the many errors on the last two blogposts. I proof read, but I think auto correct is getting me. Even as I type now, several words are changing or deleting with out me realizing it.

Em had a rough night. I think the air from yesterday in her belly has been causing some pain. I'll check with the doctor today. Off to start what I'm sure will be a very busy day.


 

Still home and pump trouble

We made it through the weekend, but barely. I almost brought Emily back to the hospital a few times, but hung in there.

Our greatest problem has been the feeding pump. Emily is very fragile as far as her weight goes. The constant pump issues have been extremely stressful. After the charger issue, we used the new pump. I began to have concerns about it delivering the correct rate immediately. The volume I set to be infused was about four hours worth, and it took around 6-7 to be delivered, but seemed to go faster when plugged in to the charger. At first I wasn't sure exactly what time I started it, but began to pay closer attention and knew it wasn't right.

Then it began to beep, and wouldn't run at all. I called the company, did trouble shooting, called again, was told I needed a new pump and would be contacted, then I couldn't get a hold of anyone else for 5 hours. In the mean time, I turned it back on to try again because I was worried she was off too long, thankfully it stopped alarming, but continued to deliver the wrong dose. When I did finally hear from them, they said there were no pumps available until Monday. If it hadn't restarted, Emily would be in the hospital right now. I was LIVID.

This morning, we woke up to a pump that never alarmed when the dose I set was delivered, and instead continuously pumped air into her for what we think was at least an hour. It's supposed to alarm when there is air in the line. I was in tears at that point, and still no new pump. They are our in-network provider, but we are done with them. It has been awful and dangerous for Emily. She lost more than a pound this weekend with all this nonsense.

Needless to say, this is far from over. She is still home, but would probably have been better off in the hospital. I am exhausted, frustrated, and completely baffled. I'll take Em to the doctor tomorrow for a check up, and then change pump companies.

She is so happy to be home, we are doing all we can to keep her here. She has been laughing at Sarah all weekend, because Sarah is bouncing off the walls excited about being blessed by a trip to see her BFF. She gets to fly to Alabama and spend the week with her awesome friend.

I can't tell you how much this thrills me. Hannah's best friend Kelsey was in town this week to see her, and now Sarah was completely and hugely blessed with a flight to see her friend. She is so happy, and I am grateful that my girls have something fun to do this summer, and it's not all hospitals and stress! God certainly blesses us through some wonderful friends!


 

Crazy

This day has been nuts...and I'm not even sure I'm on the same day.

Nope, 12:27 am; a new day.

I finally crawled into my own bed after a hot bath, and am snuggling up in Jeff's big t-shirt. They frown upon such casual sleepwear in the hospital, but it sure is comfy at home.

We all agreed to try going home early in the day, so we were able to begin working on our discharge. It was the third day in a row with no weight gain, which made us all even more nervous about this plan, and extra cautious about everything being set up perfectly at home. She also had a 100.0 temp right before we left :/ I can't even talk about her condition tonight because I need to believe that we can get through this. I have faith that we will be carried through.

Because of her precarious place, the hospital wouldn't let us go until all of the feeding supplies were in order. Along with the hospital social worker, I made a million annoying phone calls over 7 hours trying to get things in together. Keep in mind, all of this has been worked on all week. No one should have been surprised she was coming home. The agency that delivers our feeding pump and formula along with micro lipids and supplies were impossible to pin down, so we waited, and waited. Finally about 4:30, they said it would come by 8pm, so we decided to leave at 5:30 so Em wouldn't be off feeds for too long. They also couldn't deliver any formula until tomorrow. The hospital scrambled to get us enough food for tonight, but it was crazy, because of the mix she's on.

We got home around 6:30, and enjoyed a short reunion and then Emily needed to lay down. The pump finally got here at 8:45, which upset me because Emily missed 3 precious hours of feeding. As soon as the delivery guy left, I set it up and realized they sent the wrong charger for our pump. It would die around 4 am, and she would be without food again. We thought we would have to go back to the hospital. It was very stressful. I called the company and was put on hold for 45 minutes, until the call was dropped. I called back freaking out. They told us there was no driver to deliver it and they couldn't help us. I'm not even starting on that one. Jeff offered to drive to Charlotte (2 hours away) to get it. As we were waiting for them to get the proper cord, I was tearing through our supply closet. Emily had a very old pump that we own. I didn't think I had any supplies for it, and wasn't even sure if it worked, but it fired right up, and miracle of miracles I reached in a box of old feeding bags (we've had all sorts of pumps over the years), and pulled out exactly what I needed. I promise I've looked through that box many times before for bags for that pump, and didn't find any. Amazing, and completely from God.

We hooked up the old pump and saved Jeff a 4 hour drive and Emily a possible return to the hospital. At 11:45pm, it was finally all settled and I crawled into a hot bath, and now I hope and pray for sleep and a less stressful day tomorrow.

This has been C.R.A.Z.Y. It has to get better, right?


 

Home

I think we are going home today. I want to draw all sorts of happy faces about this news, but it's not completely joyful.

I say this often, but it is always true. I have never brought a well child home from the hospital. Emily is better, but far away from well. She still has not gained weight, and actually she's lost to a frightening level. No surprise she didn't tolerate canola oil directly in her intestines. That still sounds nasty to me. We had a horrible 2 days with lots of crying (her and me), and I finally refused it. She finally felt better yesterday. They replaced the oil with micro-lipids, which are broken down fats made for the tube. So far (10 hours) she is tolerating this well.

There is no good explanation for why a child who tolerates full feeds isn't gaining weight. It is frustrating for her entire team. Yesterday, we decided it was time to go home, weight gain or not. The only snag could be weight loss again today. That could keep us here. Otherwise, I think it's best to get her in her own environment and work with her there.

She can not get sick at this weight. She is so tiny that she can't lose any more. If she doesn't put significant weight on in four weeks, she won't be able to start school because of infection risk. If anything happens at this point, they will start TPN. That makes me very uneasy. Yesterday, all of this if/then talk was more than I could take. I had tear-filled conversations with every poor soul that walked through the door. Poor medical staff :/. She is obviously exposed to lots of germs here in the hospital, which is my main incentive for begging them to let her go.

Please pray for her, and us we take on the huge task of getting this girl healthy again. She has so far to go. I hope I can post pictures from home soon!


 

Still here

Emily is still i the hospital, but doing alright. She has lost weight for a few days and can't leave until she gains. I hope she gains tomorrow, but she may need to gain a few days.

She is so thin. All of her bones poke out. It's not nice, but she is off all IV support, so I'm not sure they can do anything here that we can't at home. We just have to be very, very careful.

I'm still so bummed our summer is going so wrong. My mom, sister, and nieces were supposed to visit this week, but decided to stay home because we don't know how long Em will be in he hospital. I feel like everything we had planned just keeps slipping away. I'm having a bit of a pity party tonight.

It will take a long time to make up this severe weight loss for Emily, so back to medical land we go. Continuous feeds, fluid replacements, blood work, blah, blah, blah.

Emily has been extremely cranky the last 24 hours. It's wearing me down. She's so fussy and difficult to handle because she's thin. I have to be careful with how I hold her and how she lays. They also started her on canola oil, which I think is the problem. They were trying to replace the IV fats, so they are putting straight up oil in her tube. So. Gross. I thinks 40cc's of oil a day directly in her intestines is cramping her belly. Her fussiness seems to run In wave, which leads me to believe its some sort of gas pain. I refused it tonight. We'll see if she's better without it.

Overall, she still good, but not quite good enough to go home. This feels like a recurrent theme for me.

I'm going to bed, and hoping for a better day tomorrow :)



 

Home...maybe?

Emily is doing very well. She has made tons of progress this week!

She is up to full feeds. Thank. God.

We are replacing her g-tube drainage with pedialyte, and that is going well too. She tolerates 50 and 60cc flushes with no problem. I, on the other hand break out in a cold sweat when they start them. I am so ingrained with Abby's non- tolerance of volume, it's hard to think that Emily will do just fine. She does though, and it feels like a miracle. I know it's not for her, but intimate knowledge of how very wrong things can go, leaves me astounded that it ever goes right.

She finished the antibiotics for the intestines, but none of us are convinced the infection cleared. We decided to wait and see if she gets worse. That's slightly risky, but we don't want her on antibiotics she doesn't need.

I thought going home Monday was a possibility again at the end of the week, and yesterday it was a probability, but today she didn't feel as well and her weight has been flat for two days, with a slight loss today. She has to gain weight to go home. She's been on the lipids too, which should have helped with that. They stopped those tonight. Her weight would have to be up tomorrow, and I doubt it will be. She can't tolerate peripheral lipids anymore because they are burning her veins. They are very irritating, so very site that ran them is red and swollen. Poor baby. I just can't let them run through a regular IV anymore.



So, I'm not sure if she stays tomorrow, exactly what they will do to help with weight gain. We'll see. It may just take time.

She's in good spirits and has been a real trooper the whole time. Even though getting an IV in her has been awful this time, and she's needed 2 at a time. Transport (the experts) have been putting them in. Friday it took 5 sticks for 2 IVs. She's had them in hands, arms, feet, and legs. If I had realized how long she would be here, I would have begged for a picc. Shoulda, woulda, coulda.




Overall, she is very, very close to going home! I just can't wait. I left today to get the house ready, clean some, and rearrange Emily's room and supply closet to prepare for this new way of doing things. It's still such a bummer that things have to change, but such is life.

Please pray for Jeff and I to know the right things to do for her, and that God would not allow us take her home too soon, but still, very soon ;)


 

Better

Emily is slooowly getting better. She is tolerating her feedings well on the new formula and schedule. She was more like herself yesterday, and today we actually took a little walk off the unit. She is weak, and it will take some time, but she seems to be turning around.

She had her first weight gain today. Thank you God!! She lost 6 1/2 pounds total. She was 68 pounds 4 weeks ago, and yesterday 61.4. It is so hard to see her so thin. Her little bones poke out and she needs to be turned constantly to keep her from getting too red.

The good news is she's better. We still have several things that need to happen for her to go home.
-she has to tolerate water added to her feedings instead of IV fluids to supplement. This raises the rate, which I think she'll handle fine, but we'll see.
-she needs to recover from infection and have normal poops :). This is very important because she losing lots of fluids, and not absorbing as well with that going on.
-she's draining a lot off her g-tube which needs to be replaced with flushes in her j-tube. We haven't even started to deal with that yet.
-they started lipids (IV fat supplement) to help with weight gain. She has to come off them, probably next week, and then maintain weight.
- she needs to consistently look better without big swings in her blood pressure and temperature.

Overall, these are very doable goals! They just take time. They take up our summer time :/ I'm still unhappy about it, but resigned to the idea now. If everything goes perfectly, she will go home next week some time. I originally thought Monday, but they extended the lipids through the weekend, so no. I think Wednesday is the earliest we could go.

Here is Emily looking happy, but with a bazillion things on her IV pole~
They gave her that blanket here. She loves it. Those wild colors make her happy! I don't. That makes her love it even more :)




 

Disappointed

Well, things didn't go as planned today. Emily didn't handle the formula we had her on well past a certain point. We tried twice, but she seemed to have pain and cry when the rate went past a certain point. The good news is, she was really close each time, but not quite close enough. The infection might be complicating feedings too.

She has lost so much weight in such a short time (almost 6 pounds now). They are starting her on lipids with her IV because they can be given through a peripheral line, but if she isn't able to go all the way up on the new feedings by Wednesday, they are going to place a picc line and start full TPN. Please pray she tolerates feedings. She digests just fine, but she's never been fed 24 hours a day before and seems to struggle with the constancy of the feeding schedule more than the volume. They did change the formula today, so hopefully that will help.

If they have to start TPN, we will be here a few more weeks.. If she can tolerate feeds, we could go home by the end of the week, or early next week.

I went home for a few hours tonight because I just needed to get out of here. I can't do this again. I cant handle the whir of the iv pump as background noise for weeks. I am so sad that another summer is spent in and out of hospitals.

I miss Abby so much, and all of this belly talk is killing me. Most of the time when I'm here, I can't even think of Abby and deal with Emily too. I have to push all of that grief aside and deal with the living. Then, something small makes me think of her, and I see her smile in my mind, and feel like I've lost her all over again.

It all seems so unfair. I know life never is, but sometimes, for some people it seems exceptionally unfair. I walked away from Hannah and Sarah again tonight and again, hated seeing the looks of concern mingled with resignation on their faces. They looked so very young for such knowing, aged expressions.

Even if everything else goes perfect, it will take time and energy to get Emily back to where she was. Remembering where we were this time last year with Abby makes me thankful that Emily can get better. I guess I just feel so upset that she has to.

Disappointment is overwhelming tonight. I'm praying for my girl as we go to sleep, for healing for her little body, and for God to replace this disappointment we all feel with peace, hope, and honestly just a little teensie glimpse of what in the world He is doing!



 

Emily update

Emily is FINALLY beginning to feel a little better. It seems like forever since she felt good, but it's only been a few weeks.

She has an intestinal infection that they are treating, but it has been a real pain to deal with. We are working on feedings, which she's doing great with, but the infection is causing lots of GI symptoms that have kept her feeling really bad.

The j-tube went in with no problem, and is now running. She should be up to full feeds tomorrow. Yay! We are expecting her to go home early next week.

All week, doctors mentioned TPN, but thankfully, that seems to be slowly sliding off the table. Em lost 5 pounds through this. 5 pounds is huge for her. It's half of her weight gain for a year. She will put it back on but it will take time. It's really not fair for her to lose so quickly what takes months to put on.

Jeff and I are emotionally drained. Only 10 months after Abby went to heaven, we just weren't ready for a health crisis with Emily. All winter, I felt so grateful that we had a break from hospitals. Emily was so healthy, and doing better that she had in along time, but one thing happens and I am reminded how fragile she is. I am also reminded how different she is from Abby. She digests food. I keep telling myself over and over this is different. Emily keeps telling us. She handles her food just fine. She is just sick now.

She's very, very weak, and again unlike Abigail, tells us clinically that she isn't well. Her blood pressures have been low, her pulse ox drops, and her temperature runs low when she feels bad. Yesterday, all of those numbers inched up. :)

I went home last night for he first time in a week. Home is wonderful! I can't wait to be back. Just a few more days. I can make it. The girls, Jeff, and I just hung out with Emily today. We all relaxed a bit. Hannah read to Emily from "The Sweet Life of Bees." Emily loved it, and I loved time with my family together.








We're almost there. Please pray that she recovers quickly from here on out, and remember my nephew too. It looks like he and Emily might go home he same day!


 

Good and bad

When I left off last, Emily was doing well and we decided to make our trip to Florida. Wednesday morning, we drove 10 hours (took us 12) to the panhandle/Destin area. Emily did very well in he car. It just rained the whole time.

Thursday was rainy, but calm. She are great and was happy. Friday was more rain, but we decided to go out for a while. We hit the panama beach pier before it started to rain. This is our only vacation picture.



We were went to Fridays for a quick lunch, where the first signs of trouble appeared. Emily refused to eat. I figured she was just having a bad moment. We were an hour from my in laws house, so we headed back. That was one of the longest hours of my life.

She started retching and gagging horribly. Constantly. I had to take her out of her car seat and wrap a seat belt around her in the back as tried to throw up every single minute for an hour. She was ice cold, but sweating. Her eyes rolled back in her head. I was scared out of my mind. I wold have called 911, but we were in the middle of nowhere, and we had to get home.

As soon as we got back we rushed her in the house and hooked up a g-tube to vent. She has a Nissen for reflux, and can not throw up, so venting the tube allows her to drain off the stuff that made her sick. She immediately drained about 10 ounces of nasty green stuff. That's a lot for her. I gave Zofran and called the doctor. We were about 2 hours from the closest pediatric hospital. The doctor suggested we try to get home, so we did. We pack up the car, and headed out the next morning.

24 hours in the car, 17 inches of rain, 4 days and one sick girl.

I couldn't get food or liquids in her for about 30 hours, so we came straight to the hospital when we got to nc. She was admitted, started IV fluids, and then trying to figure out what was wrong.

First they told me it was constipation. It wasn't that. I threw a fit I'm not sorry about, and they looked further. She looked awful for two days as her belly continued to drain green. After what we just went through with Abby, we were living in terror as we watched Emily so weak and sick. She had vey low blood pressures, she didn't make any urine for 22 hours. They scanned her bladder, but it was empty. She was very, very dry, and it took a few days to get on top of fluids. Today, she finally looks better.

Yesterday, she had an upper GI series that showed SMA syndrome had returned. That's what she had 2 years ago when she and Abby were in the hospital at the same time. Basically, the mesenteric artery and aorta smash her small intestine causing a blockage. It doesn't require surgery because her own body fat will eventually lift the artery off her bowel. More good news is that once the dye moved past the blockage (lying on her side, almost stomach, it moved through) her motility and absorption are perfect. Her belly isn't sick, she is just sick temporarily. She's not Abby.




Today she is going for a g-j tube. We will have to formula feed for a while and put some weight on this kid! It's very frustrating for me. We feed her all the time, and she is a great eater, but the pounds just don't come easily. Then one little illness and it's all gone.

I'm thankful for answers, and the ability to fix this without surgery. It's been a very trying week for us, but finally heading in the right direction. Whew!



 

Doing well

Emily is doing really well. She will probably go home today. I'm excited/nervous about that. She and I really want to leave for our family vacation, so we are pushing past this thing as quickly as possible.

We are planning to go to the panhandle area of Florida to visit Jeff's Dad and stepmom, then head over to Orlando for a few days. I'm worried all of that travel is too much for her, but we are going to try if they discharge her. We can always head home if she's not doing well. I just don't want to end up in a hospital far away from home again :/

Catching up on rest...




I finally slept some last night. It's awesome to sleep 6 straight hours after days of being awakened every hour. I haven't packed a single thing, so if we get out of here, I'm going to need every ounce of energy those 6 hours gave me!

I'm hoping and praying for a good day :)