One Week down...

Who knows how much longer. Dr. Martino should be back tomorrow, and they will take another sample of her CSF. The fluid is looking more and more clear. Just a slight tinge of yellow now.
We have been able to take the "no-no's" off her arms so she can move them around now. She hasn't tried to pull on any of her tubes or lines. So, you can say she is being a good girl. She is definitely tired of being here and staying in the bed. The movies are getting old! She is getting more sleep now, but it is still very restless. The night nurses do all they can to leave her alone, but they still have to come in at strange hours to give her antibiotics.
Em and I take turns staying at night (and my dad graciously took one night so we could both go home with the kids). The chairs in the ICU are quite uncomfortable, and ours doesn't want to stay down in the recline position unless you push yourself way up on it. Sleep here is not restful for so many reasons.
I was watching a movie tonight in the room, and there was a scene in a church service. The preacher made reference to being in situations that make us weary. It is not a sin to be weary, but it is a sin to give up. Being in a hospital definitely makes you weary, and this morning I was particularly tired. As many know I am leading worship at our church for now. I was rehearsing with the choir and we left to go out to the auditorium. I stopped in my office for just a second to put something on my desk. I just stopped for a moment, I have to tell you ... I just felt completely weary. I just said a quick, "God give me strength, cause I am so tired and I just don't think I can do this." Then I walked out to the stage. When we started the first song, I must admit, I looked at Emily and said, "Okay, let's do this thing." Real spiritual...huh?!
But, as the Lord does so many times, we began to sing, and I could physically feel my spirit being renewed. With every song, he renewed my spirit and gave strength to my body. The Lord is so faithful. I sometimes wish that I could express to the people of our church what the Lord has taught me on this journey for the past 2 years. I could tell them time after time that the Lord was faithful to me. I could tell them how he heard my cries and comforted me when no one else could. I could tell them how when I was a low point he would send someone along or have one of you send me an encouraging comment and it would make all the difference that day.
ALL I can tell you is that my faith has fallen short MANY times! I have cried to him and yelled at him. I have questioned him and myself. There is a song that we have sang for years at church, and it is a beautiful song. But the first time we sang it (about a year after Ivee's brain surgery) the words became real in a way that they never could have before. The lines to the 2nd verse say it all. I'll put them in my words.
When my strength was all but gone and my heart had no song...then God was faithful to me. In all the times that my heart looked away and there were MANY MANY times that I just could not pray...even then God has always ALWAYS been faithful to me. I specifically remember a night in the hospital. I just looked up towards the ceiling and yelled, "God. I am so mad at you!" That may be a hard confession, but it was what was in my heart. And you know what...he was there to say, "Yes, but I still love you!" And after the first few months, I found it hard to pray any longer. I just didn't know what to pray any more, and I frankly was just trying to live and take care of my family. And you know what...God was still there saying, "I know, but I'll help take care of you." He is a FAITHFUL FAITHFUL GOD!
I am still far from what God would have me be, and I may not pray like I need too, or be in the Word like I should all the time...but I love and trust in Him! I believe!
I hope your hearts be encouraged like you have consistently encouraged me! You are such a blessing! God bless you all, and keep on praying!

One Down...

13 to go...


Today they extibated her, so the breathing tube is out. They keep commenting on how stubborn and strong she is. Well, they don't have to tell me, I live with it. But that is what gets her through. The Lord knew that Ivee would have to be a tough one! She has to be! She is currently resting, as I am showing you below. Once she wakes up, I am sure she will want to be held, but the ventriculoscopy has to stay at ear level, so we can't just pick her up and down as she pleases. That should be a fun battle.

If anything new arises, I will keep you informed. Thanks again for your prayers, love and support. If anyone wants to visit, we welcome you (as long as you are well). Em is working overtime alot this week, and I am usually in her room. We ARE in ICU, so only one person at a time can come in (if I am in the room/2 people in the room at a time is the limit for ICU). Em and I will be eating out this whole time, but we welcome homemade snacks...hint, hint...but South Beach Diet approved :)

Oh, and dark choclate M&M's are my favorite/weakness! :)

Hospitalization

Some are aware, but Ivee is in PICU at USA Children's and Women's hospital. She began leaking again, a steady stream, from the wound again yesterday. A low grade fever had set in Friday and was persistent even with Augmenton (antibiotic) and Tylenol. We returned to the ER Sunday around 2:00 p.m. The same doctor from Thursday was attending, so she was quite aware that this was a greater leak then before. Dr. Martino, Ivee's original neurosurgeon was contacted. He was concerned about infection and need for a shunt, so he ordered a CT scan. *On a funny note: The ER doctor knew of Ivee's anxiety from Thursday, so she ordered that she be given Adavant (an anti anxiety medicine). I was not here for the CT, but Em says they left her awake. This concerned him, but once they cocooned her onto the board, Em says she lay there fine. He began to sing to her, and as they were moving her into the scanner she said, "Whee." I don't know how good Adavant is, but hey...I think I could use some of that! That was just too funny. Sorry I missed it.
Anyway, Dr. Martino confirmed what he feared, it was meningitis. For those who don't know, in Ivee's case it is swelling and inflammation of the ventricles (ventricles are what carry and circulate brain fluid). (*Note: I am unofficially a medical advisor now for anyone who's child may have some sort of brain problem. The great thing is the doctors can use the big words and initials, and I actually know what they are talking about)
Dr. Martino advised us that she would need immediate attention with antibiotics to fight the infection, which we believe she contracted at surgery but the signs were not evident until leakage occurred do to pressure build up. He also told us that surgery would be necessary to resolve the pressure issue. With Ivee's 1st surgery, Dr. Martino did a ventriculoscopy which is putting a pressure release valve on top of her head....yes, they had to shave alot of hair off the top of her head. This would stop the headaches and the leaking out of the wound site allowing it to heal.
So, she has been lightly sedated since surgery last night and will probably remain that way until tomorrow. She has interacted with me wanting me to pick her up, which I can't, waving bye to people, and pointing at the door. She has also shimmy danced to music, so she is slightly aware, but sleeps most of the time.
She will remain in PICU for 10 to 14 days. During that time we will fight the infection with antibiotics. Then, if the suture site looks good, we will clamp the valve and see how the pressure in her head is. If it stays low, no shunt will be needed, but if it becomes greater and stays there, we will be looking at another surgery to put the shunt in. This stinks, because we tried so hard to keep her from having to have one with the 1st surgery.I hope all this makes sense. I welcome questions and comments.
Pray for rest for Ivee and us at the time. There really isn't a place to "sleep" in the ICU, but once she is "aware" we won't want to leave her alone and scared. (Good thing my dad is a chiropractor, so he can knock all the kinks out of my back!) Pray that Brittney and Ethan will be taken care of...not necessarily physically, but emotionally and to have some normalcy. It took a long time to feel normal again after that 1st year. Gratefully and hopefully it will only be a few weeks this time.
I'll keep updating as progress is made.

Leakage...

We were in the ER with Ivee last night. About lunch time, her head starting leaking CSF. This throws off the pressure in the head and can cause quite a headache. Every time she threw a temper tantrum she would leak more and more. We dermabond it (super glue) and covered it back up. Today she has been worse than yesterday, as far as attitude goes. She feels horrible. She has a slight fever, congestion and a green nose. Probably caught something from the ER yesterday! We just can seem to get ahead on this stuff. We didn't freak out about the leaking fluid cause this happened with her first surgery, but to have to take her to the ER to fix it and then catch a contagion from another kid just stinks!!!
Life just has sooo much going on, and I feel guilty for it all. You just can't be three places at once. A friend of our passed away Thursday, and her husband asked Em and I to sing. Looks like Em will have to do it without me, cause someones gotta take care of Ivee. My dad might be able too, but with the way she has acted the last 2 days, she probably will want nothing to do with him.
I'm just tired and running on and on. She isn't sleeping well. She has pretty much slept all day, but you have to hold her. Then she screams in the middle of being restless...and I mean screams...not crying! I hope I made sense, cause I'm not taking the time to proof read.
Well, just pray for us and mostly for her.

Going Home

The doctors are okay with Ivee going home today. They are "impressed" with how well we deal with her and the situation. We are like..."This is nothing in comparison to her first surgery!" She is doing well too, so that makes it easier. I guess they are not use to dealing with parents who have to take care of a child the way we do. Ivee just requires alot of attention, and we want what is best for her. So (I suppose from watching us with her) they are comfortable with our taking her home. They are writing the discharge orders and we will leave sometime this morning. We will take our time coming home so that she is comfortable as can be on the way home. She, by the way, is more than ready to leave. Anytime they (nurse/doctor) walk into the room she will whine, and immediately wave at them and tell them bye. She points at the door and look at us like..."Get me out of here!" She also wanted to get on the floor last night. Of course, we didn't let her...it is a hospital floor. Le Bonheur (which I found means 'Happiness' in French) is a cleaner hospital then many we have been in, but still...not gonna let her on the floor with her hands always on it.
It is quite windy (with gust) here in Memphis, so we will have to be quite cautious on our way home. I suppose it is remnants of Ike.
That is all for now.

The Day After

Ivee came to the floor at 8:30 a.m. She is doing quite well. She isn't complaining about pain too much, but we also make sure she doesn't have much of a chance too. She is on morphine/benadryl for immediate relief when needed and Loretab for long term pain needs. I decided to post some pictures, some form post surgery, but some just cause they are so darn cute. Oh, and let me correct my middle of the night spelling. We are at LeBonheur Children's Hospital. (Not Leboner) It is french!
First pics, while I was outside one day at home, I turned around and Ivee was looking out at me like this. TOO Funny, I thought!

This is Ivee one Sunday morning getting ready for church.

Here are some pics from the zoo. In the first she is extremely excited about the polar bear swimming along the window of his exhibit. The next is with NEMO! And then Ivee and Mommy outside the lion's exhibit.

Here we are in the bathroom Wednesday night, hamming it up with out hair do!

Here is Ivee this morning post surgery. She is doing fine as you can see.

She is sleeping now. Thank you for your prayers again and again. I'll update as we know more things.

Surgery day

Ivee came through surgery fine today about noon. It took a little longer than we had expected. Dr. Sanford had to cut the entire length of the old scar, but she still has plenty of hair left! He said that there was quite a bit of scar tissue. He cut a large opening in it so that fluid would be able to run normally to the parts of her brain needing it, and to relieve pressure on that area of the brain. Also, (for those familiar with Ivee's hydrocephalus, or cyst on the back of her head from the previous surgery) he took as much of that membrane out as possible so that the pressure would also be gone. He then removed a bit of the apparent scar on the outside of her head. The outer scar became infected after her initial surgery and caused large potted scars in places. So, he cut some of that away to make a more pleasant scar for her. (This will help with her vanity as a teenager I suppose!?) He said that her recovery and pain will be lessened more than the initial surgery cause we are sewing scar tissue to scar tissue instead muscle to muscle. Makes sense I suppose.
Em and I walked into the ICU and were surprised to see Ivee sitting up in the nurses lap, holding her head up, and turning it. I knew it wouldn't be as bad as the last, but I wasn't expecting that. She saw us and reached for us immediately. She threw quite a few fits for about an hour. She wanted the IV and support off her hand. Later, we looked and her arm was twice it's normal size and blue. She had an occlusion in the line and it was causing severe pain. So we removed the IV from the hand (she still has one in her foot and her port for us to use). We had to cut her bracelet off cause it's was starting to cut into her arm. Once we did this, she calmed down a bit. So, it was pretty painful...obviously! She is on Loratab and Morphine/Bendryl. So, she isn't in alot of pain right now. Just sad :(
Hopefully we will be in our room tomorrow. And if all goes well, maybe we can head home Sunday. For those who would like to know, we are at LeBoner Children's Hospital here in Memphis.
Thank you, thank you, thank you for your prayers! May God bless you and I'll keep you informed as I can.

The Day Before

We are having a time here at St. Jude, good and bad. We accessed her port yesterday, which is always dramatic. And this morning we had to do a pre-op screening with labs. So, we were stuck again, cause you can't do a culture through a port (the heparin interfers with the results).
Dr. Sanford actually was at the hospital while we were there, so we saw him early and had the rest of the day to ourselves. As we were talking to him, I informed him (once again) that we had not seen the scans. So, we found a PC and took a look. He showed us the issues first seen in the MRI and then the contrast dye CT. You could plainly see what he was talking about if you are like us and have looked at many MRI scans. The area of the brain that does deal with balance does have visible pressure on it, as well as the area of the brain that controls swallowing is not receiving little (if any) CSF (fluid). I have come to the conclusion that because of this, Ivee is nauseated often with or without being feed. She never has the desire to eat cause of how it makes her feel...worse! So, this is also (once again, my conclusion) the reason why she won't try to eat by mouth, and why she had digressed in that area. The pressure and consistency of the scar tissue has caused this area to loose more and more communication with the other parts of the brain. SO, my conclusion is that not only will this surgery hopefully allow Ivee to stand and walk alone, but that it will cause her to no longer be naucious and give her a desire to eat. Dr. Sandford is not sure how extensive a surgery this will be until he gets in there. He said it could possible just be that he needs to slice open the scar tissue to allow it to drain, or it maybe more involved. It's just not something that you can tell from a scan! I hope that all made sense!
We will be at the hospital at 5:45 a.m. Surgery is at 8:00 a.m. I will update more later.
Also, we visited the zoo this afternoon. She screamed when we left. She didn't want to leave.

Surgery Push Back

Dr. Sanford's nurse called this afternoon. They have an emergency surgery that had to take precedence over Ivee's, so now we are scheduled for Thursday morning at 8:00 a.m. And all the preadmission stuff for Wednesday. My father, Ivee and I will be leaving Tuesday around noon and Em will drive up after work on Wednesday.
We will more than likely be discharged on Sunday or Monday (my assumption from what I was told). We will have to return to Memphis 2 weeks post surgery date for a check up and stitch removal. So, we will be traveling alot this month.
Of course, our regularly scheduled MRI will be the first week of November, election day to be exact, so I will have to do an absentee ballot. Could things get any more chaotic? Yes, but we pray against that.
Once again, this temporary putting off of Ivee's surgery is more than likely the workings of the Lord so that his perfect will be done. And though the reasons are not so very evident all the time, I put my trust in him.