Surviving Life With Tubes

Well, we have been home for a couple of days now, and the best way to describe our life right now would be to call it "a life of tubes." Because Ella has a few of them. The main tube will hopefully come out soon though - it is the drainage tube, and makes life just slightly more complicated for us right now. We need to empty and measure all of the fluid that it collects. And Ella needs to manage dressing and maneuvering around it. So we will be glad when it's gone.

Here is a picture we took yesterday. You can see exactly what this drain looks like. It is clipped onto the front of her shirt, so that she can walk around. You can also see one of the three ports - the one that is coming out just in front of her left ear. This is the longest of the three. There is another just behind that same ear, and the third is behind the right ear.


You can also see the stitches on her head - there are three on the top. One going down the center, one in the back, and one just above her ear. The fourth stitch is just above her right ear. Another thing to notice is the area between the middle stitch and the bow on her head - the lighter area of skin on the top of her head. Before the surgery, she had hair there. Somehow, it was removed during the procedure.

Her hair is pretty mangley right now. But there is not much we can do. We can't really wash or comb/brush it, so it's quite a sight!

We have had two small meltdowns in the time we were home. The first was yesterday, when Ella wanted to take a shower or a bath. When I told her that she couldn't, she did not like that answer AT ALL. And the second was this morning. Dave and I went to church in shifts so that one of us could be home with Ella while the other of us was at church. It worked out well because the church we go to is only a few minutes away, and there are 2 services on Sunday mornings. So when Dave went to the early church service, and I was getting ready for the later service, Ella was not too happy to hear that I would be going to church without her. It was hard to tell her she couldn't go to church, when she wanted to come with so bad. She seemed to have a counter-argument for just about every reason I gave why she needed to stay home. At least she loves going to church! So hopefully she will be able to come with us again soon.

Here are a few more pictures I wanted to post. First is a picture of Ella's main Christmas present - the Playmobil Hospital. It is pretty cool. And very realistic. She loves to play with it, and probably knows a little too much already about everything that happens there.


Last Friday, Ella and I drove up to the Mall of America. And I let her ride on the airplane. She had so much fun and it was so much fun to watch her beam as she "flew" her airplane! She is getting WAY too independent for my liking though - and growing up WAY too fast!



The day before her surgery, we received a wonderful surprise in the mail - a package from Uncle Paul and Aunt Dana! Inside were some Christmas presents for us all. Ella was so excited to open all of hers! Here she is with one of her favorites - it was a book all about bones and other parts of the body, and came with a model skeleton, that Dave was busy putting together. She slept with the book that night, and the first night back home. Yes, she is still fascinated with bones, and other parts of the human body. She held up one of the pages to me, and said "Look! Here's a gallbladder!"

We're Home! (:

Just a quick update - Like the title says, we're home! We were discharged this morning, and came home just after noon.

Ella continues to do great. She has had a few moments of some pain on her head - but it's been after a long sleep, so I think the combination of her having been laying down for so long in one stretch, and not having any pain relievers created a little bit of discomfort. But both times she was quickly feeling better once she was up, sitting with either Dave or me, and had a dose of tylenol.

She still has one of the drains attached - the other they pulled out this morning. She wasn't too fond of that happening. And she wasn't too excited about her IV being removed either. But both were over quickly, and she cheered up shortly after the deeds were done. And she is happy that the "machine" on the pole has now been freed up for another little girl or boy who will need it to get their medicine through the tube. She's also pretty proud of her dinosaur band-aid.

I may try to get a picture taken and posted sometime soon. So those of you that aren't too squeamish can see exactly what she currently looks like.

Now, I think I just may take a nap - if there's one thing that the parent's "bed" (term used REALLY loosely) in the room is not, is comfortable. So after two nights with not so much, and not so great sleep, I'm ready to crash. But at least it wasn't 17 days like the last time. For that, I'm thankful. (:

Our Sleepy Little Girl

Well, it is about 12:30, Thursday afternoon, so Ella is almost 24 hours after her surgery. She is still doing well - and is resting peacefully right now after a busy morning.

Yesterday she was very sleepy and was pretty lethargic, with her eyes closed about 90% of the time. She drank a bit of juice, but it all came up. At around 10pm, the nurse gave her a dose of tylenol (her only pain med right now) but that came right back out also. We tried again, but still no-go. So after a few sheet and jammie changes, and a soaked baby kitty-cat, she was stilll able to sleep the night away, even with no pain meds. So we are thankful for that.

This morning she woke up and complained of a little pain on her head, so we again attempted to give her a little tylenol, and were very happy when this time she was able to keep it all down. She also took a little more juice, some yogurt, and a few teeny bites of scrambled eggs - all which stayed down. Yay!

After eating a bit, she felt good enough to attempt a little walk. The lure of the playroom provided plenty of incentive for that. She walked all of the way there, played a bit, even made a little craft, and walked back to her room. I can tell she was pretty pooped after that. So she is now resting peacefully in bed.

With her being so much more alert and acive today, we are very thankful that her pain seems to be minimal, and that all of the things dangling from her head don't seem to be bothering her at all - there are three small ports which come out right around her ears, and two drainage tubes, which also oome out right behind her ears. These have clear grenade-shaped containers at the ends, where the collecting fluids can be seen. Ella thinks they are her "medicine" - and that it is going "in" to make her better, as opposed to coming "out" - and we are letting her believe just that.

We are very thankful for the many people who are thinking of and praying for her (and us) right now. She is a very lucky girl to be so loved by so many. And we are pretty lucky too. (:

In the room

Ella is now in her hospital room and she is doing great! The staff person who brought her up from the recovery room was very complimentary in how well Ella did in the recovery room. When they brought her up, Ella was quite calm and was pretty much just laying there and looking around -- almost acting as if what just happened wasn't really a huge deal. We're continually amazed at how well she handles things -- she's just an exceptional little girl!

She has four incisions, two drains, and three ports. Her head is not wrapped at all so we can see everything. Yet we are thankful that she doesn't look near as fragile as we expected her to look.

Right now she is resting comfortably. She is quite sleepy and that's what she's doing right now. The nurse has started her on some pain medication already in order to try to stay ahead of the pain instead of getting behind.

All in all, we feel very good about how everything went today.

"Give thanks to the LORD, for he is good; his love endures forever." Psalm 107:1

Out

Ella is out of surgery. The surgery lasted about 4 1/2 hours. It took a bit longer than anticipated, but not because of any major complications. We have talked to the surgeon and he is real pleased with how everything went. Ella is now in the recovery room and we are waiting for her to be brought to the room where we are.

Surgery

Just posting that Ella is in surgery right now. Getting there went as well as can be expected -- some soft sobbing but no major protesting. We will be glad when it's over and Ella is in her room. Check back for more updates throughout the day.

Surgery Day

First of all, Merry Christmas and Happy New Year to everyone! I'm sorry that we have not been very diligent lately in our postings.

Anyway, what is more pressing on our minds right now is Ella's surgery that will happen tomorrow, January 9. Yes, tomorrow is the day that that the surgeons will place three tissue expanders underneath Ella's scalp. The surgery is expected to last 2 to 3 hours and we are anticipating a 2 to 3 day hospital stay.

Ella is doing well. Right now I don't think that she knows that she's going to the hospital tomorrow. I guess we'll break it to her at about 5:15 in the morning. We have to be there at 6:00 and the surgery will begin at 7:45.

We are not looking forward to this surgery and the next following months. We dread the thought of Ella having these expanders in. But at the same time, we know that it is the next necessary step in her recovery.

So we are praying that everything will go well. We are expecting that it will. We are concerned about the amount of pain that Ella will be in after the surgery. We are hoping that it will be minimal and can be quickly controlled.

We covet your prayers and will post some updates for you in the following days.