Tuesday, July 31, 2012

2 weeks post surgery

It has been 2 weeks since Ansley had her pacemaker surgery and she is doing good.   She has just started rolling over and putting weight on her stomach but she will not use her arms to lift or stretch, in order to crawl.  She has started eating a little better than she was.  She now eats baby food at all 3 meals and will eat about half a jar each feeding.  She is showing a little more interest in grabbing her puffs or yogurt melts and trying those.  My hope is in the next month she will slack off on so many bottles and start eating more foods.
 On Friday TEIS (Tenn Early intervention services) came to talk to us and get the paper work started in case Ansley does need early intervention.  Because she is special needs she definitely qualifies for TEIS but we are not sure if she will meet the requirements to get services. We are mainly concerned with her gross motor skills but they will come next week to evaluate her in occupational, physical, and speech therapy.
Most everyone reading this knows I had to back out of my job offer with a local school system to stay at home with Ansley. This decision surprisingly was VERY hard for me and very emotional.  I know without a doubt I'm needed most at home with her but staying at home long term is not something I want to do, especially with Aiden at home too.  We made the decision to keep Aiden at home too instead of paying for him to go to daycare when I have no income.  Our goal is to get these seizures under control and get them both back in day care so I can find a job and get started using my new degree that I just spent 2 years getting.  Having this job was one very huge weight off my back so now I've added that weight back on top of the other.
Speaking of getting Ansley seizure free...she hasn't had a seizure in 2 weeks and 3 days!! This is the longest she has ever gone without having a seizure since her diagnosis 3 months ago. We are hopeful and praying this change in med is the answer!  Since she hasn't seized we have not seen how the pacemaker will change her seizures, if it does change them. We are fine with not knowing and will be pleased if her heart never needs that help pacing!
Thank you for checking on us, asking about us, bringing us dinner, sitting with us, and most importantly praying for us!

Saturday, July 28, 2012

2weeks

Its been 2 weeks since Ansley had a seizure!!!! Can I get a whoop whoop??? :)

Sunday, July 22, 2012

Life at home

First I would like to let you know wew are 1 week and 1 day seizure free. This is not abnormal so I can't get too excited. She will usually go a week without having one but I am praying the increase in frequency and amount on her meds is really helping. Being at home has been a little different. Ansley now sleeps with a pulse ox and an apnea monitor. Plus we take an oxygen tank with us whereever we go. Yea I looked silly going for a walk this morning pushing a stroller and oxygen tank. But you do what you gotta do. Ansley loved seeing Aiden when we got home and of course we did as well. I know it's nothing but babble but Ansley makes the best "a de" sound ever, which just lights up Aidens world. We were a little nervous of how Aiden would be around her since he is usually unintentionally rough, but he has done well. It breaks his heart to see her uncomfortable. She hasn't seem to hurt too much since being home, just uncomfortable. She has tried to roll over which she let us know did not feel good. She likes to sleep on her side or lay on my shoulder to sleep and she can't do that just yet, so getting to sleep is a task. Understandably she just wants to be held and cuddled (gently), which we have no problem doing. Overall Ansley is doing great!!! One thing I have been meaning to do is let you know just how blessed and thankful we are to have wonderful families. Brandon has 2 sisters and I have 2 brothers, as well as our parents. Since the very first day Ansley went into the hospital they, along with my sister and brother in laws, have been there with us non stop. They have packed our bags at the last minute, washed our clothes, brought us food and snacks, taken care of Aiden, and driven miles and miles to be with us. We already know they are the best family but I have failed to tell them that enough! Thank you all so much!!

Friday, July 20, 2012

Home sweet home

We are home!! I have a post in mind I would like to do but for now I'm gonna love on my little guy!

Thursday, July 19, 2012

Rough days

We had a rough day yesterday. After my post Ansley just could not get comfortable she was very inconsolable. She would fall asleep for a minute and then scream out. Her heart rate was high and around 7 her fever spiked up. All I can think about is infection. They started her back on fluid IV last night and her heart rate came down and fever is 100 now. She is not quite as cranky today. They have stopped her fluids so she will want to eat more and rely on her formula more than the IV fluids. The doctor started another antibiotic just in case she does have an infection. Because she is showing on us signs of pain they are still giving her pain meds, just Tylenol with codeine.we appreciate the prayers and are praying for a good few days so we can go home and see our sweet boy that we miss so much.

Wednesday, July 18, 2012

Update

Ansley is doing well. She was just moved out of ICU into a regular room. I got to hold her for a little while which was wonderful. She is taking a bottle again. It's small amounts but every little but helps. She had a good night and as doped up on morphine. Her heart rate kept going up, probably because she was in pain and a little "dry". When her heart rate went up her pacemaker was "confused" and tried to step in and pace. They have fine tuned it and hopefully that will help. We have a ways to go recovery wise and a long ways to go with Neurology and her seizures. We appreciate the continued prayers.

Tuesday, July 17, 2012

Complete

Ansley is out of surgery it went well.

Surgery

Ansley is currently in surgery.

Monday, July 16, 2012

Surgery

So it was everyone's thoughts that a pacemaker is the best option for Ansley. Her surgery is at 10am and her surgeon is Dr. Goldberg! Thank you for the prayers I'm sorry so short it's been a rough day and night! On top of the news today I really really am missing my dads helpfulness and love in these situations!

Sunday, July 15, 2012

Nice day

No seizures to report today!! Ansley is wire free on her head!!! We are all so excited that she is free from those heavy cords. Everything the neurologist needed to see he was able to see over the last few days so it was no longer needed. We moved to the cardio floor after lunch and have settled in here. Dr. F came in early and talked to us. He just wanted to make sure we are prepared for tomorrow and getting a game plan for going forward whatever it may be. He did explain a little more what the cardiologist will be looking for tomorrow. The cardiologist will review the readings from the holter monitor (monitors the electrical activity of the heart) that she was wearing during the seizures. If during the seizure her hearts electrical system was affected we will most likely be looking at a pacemaker. However if the heart is having prolonged beats or skipping beats we might can treat other ways. I will update on Facebook or here tomorrow if I have time to let you know how exactly to pray for Ansley. On a positive note we did have lots of visitors today, which was great for Brandon and I. This morning we spent time with my mom and Aiden. I miss that wild boy so much and so does his sister!! At lunch, my moms cousin and his wife visited and brought us lunch, which was soo incredibly kind. Late afternoon and tonight we visited with my best friends and their hubbies. It was soo great to have fun laughing and hanging out. Most everyone knows my best friend Beth's sweet girl had 2 open heart surgeries at 6 months. She and her husband gave us some words of encouragement today so I'm so thankful they came to see us today. I also received word today that our wonderful pastor requested prayers for us from our church family. We feel them and appreciate all of them. Thank you.

Saturday, July 14, 2012

From head to heart

This post will piggy back off yesterday's. I'm not sure how we came to this hospital as a neurology (head) patient and possibly leaving as a cardiology (heart) patient. Today Ansley had 3 more seizures, 1 that was worse that yesterday's and 2 milder ones. The milder seizures are not as concerning as the harsher ones of course. What happens during her seizures is Ansley's BRAIN stops, completely flat lines. When the brain stops the vagus nerve, nerve running from brain to heart, stops as well. When the brain is not telling the heart to pump it stops. Ansley's heart is stopping causing her to turn blue but within a few seconds it goes back to normal rhythm. I must note real quick Ansleys heart is very healthy when not seizing. Her heart is just the innocent bystander to a horrible wreck in her brain. Her brain is affecting her heart. Ok back on track- Right now her seizures are lasting 1 minute give or take some. However if she has a prolonged seizure and her heart is not pumping and giving blood back to the brain it could damage other organs or her heart might not start back and she will not live. Her neurologist has seen it happen and luckily the child was at the hospital and was able to be revived. Well we can't live at a hospital we have to go home and back to life so we have to find a solution until her seizures are under control. The solution is a pacemaker. It's an on demand pacemaker that will only kick in when she seizes. But because Ansley is so small the pacemaker procedure will be a huge procedure consisting of cutting open her chest and sewing the pacemaker into both chambers of her heart. The pacemaker will keep her heart rate from not dropping into the 10s and 20s when seizing. But the problem is now do you want to open up the chest and operate on a healthy heart of an 8 month old??? We will have the cardiologist look at all of her heart monitorings since being here and and he will determine that answer. Once we can get the seizures under control or at least milder this will not be as big an issue. But right now on average she is seizing multiple times weekly. Do we chance that they will remain short and not prolong?? Do the risk of pacemaker outweigh the benefits?? All these questions and many more run through our minds this weekend. We pray Monday the cardiologist will give us definite answers. As for now we will move from the Neuro floor to the cardio floor so she can be monitored closer for her heart issue. Our neurologist, who have I mentioned I LOVE, will follow along with us and Monday we should have a game plan going forward with or without a pacemaker. Thank you again for your prayers and tonight I can not down play the thankfulness I have that God has kept Ansley wrapped in his arms the past few months. after seeing first hand on the EEG how her brain and heart change during these I see how lucky we are the seizures have never lasted longer. Prayer Request: - Neuro and cardio get a clear game plan on what's next. - If the decision is surgery of course we need major prayers for safety during and after. - We can find a med to stop these all together. - They never get longer in duration. - I can work out the best care for Ansley and my work situation. - Aiden understands we have to be here now it's the best place to be. - Most importantly that Ansley NEVER is in pain.

Friday, July 13, 2012

Wow

Today has been more than I expected in so many ways. Because everything is still up in the air I'm just not going to go in to detail on what happened today. Ansley did have a seizure today and it was the same as always- she stiffens, stops breathing and turns blue. The doctor said she definitely has right temporal epilepsy and we will treat it. However the seizures are causing her heart to stop and could potentially be fatal. That being said we were QUICKLY referred to cardiology. Our room went from calm and wild in 30 minutes. On Monday we should know more on what's next but for now we have to stay put at LeBonheur. It's possible we are looking at surgery. We are very unsure and uneasy about the situation and could use your prayers for wisdom. Also I must add a HUGE thank you to my bro and sis in law for staying beside me, asking questions and being there for me today. I'm sooo thankful they decided to come see us today if not I would have been here alone during all this.

Thursday, July 12, 2012

Play day

Today was another day of hanging out and not doing much but playing. We had some wonderful visitors today (1 is actually laying beside me now). Aiden and my mom came this morning. Our music minister from church came around lunch time. My sis in law came again this afternoon, so I have enjoyed the company. I'm not sure if I mentioned Brandon had to go home to work. I know he hated to leave but we do have to pay the bills some how and missing work won't accomplish that. Anyway when talking to Aiden yesterday I told him there is a neat playroom here and he has been dying to play in it so as soon as he arrived today he was ready to play. I let him play in Ansleys bed for awhile and then this afternoon we packed up Ansley's wires and boxes and headed to play. They both had a blast! Other than lots of playing the da has been rather uneventful. We still have no seizure activity, which really surprises me since she's not on her medicine. Dr F did ask me today how long I can stay because he really does not want to send her home without having one he can see. therefore 1 of 2 things must happen for us to go home- have a documented seizure that he can make a diagnosis from or her skin on her head not handle the electrodes anymore. He doesn't expect to last past Sunday before her skin gets irritated! I think if she makes it to Sunday seizure free then we have some serious evaluating to do considering we can't go seizure free that long on the meds at home. Thank you for the continued prayers!!

Wednesday, July 11, 2012

We need a seizure!

You read that title correctly- we need Ansley to have a seizure!! Both of the doctors read Ansley's EEG from the night and like yesterday it was great. Her doctor (Dr F) stopped one of her medicines to see if that would cause one and so far she hasn't performed for us. We really just need her to have a small seizure or 2 for him to see. He said all he wants to do is stop them and in order to do that he needs to make sure we are treating them properly. Her heart is being monitored by a holter monitor just to rule out any heart issues, which Vanderbilt did as well. Tomorrow Aiden and my mom are coming to stay with us. I'm soo excited to see my baby boy and after talking to him today I can tell he is sooo excited too!! Please pray: Ansley has some small seizures that are recorded. Dr F can diagnose Ansley to stop these episodes. Her heart is healthy and no issues there as well.

Tuesday, July 10, 2012

Lebonheur

Ansley, at 8 months, has now stayed in more hospitals than most people do in a life time. We were admitted into LeBonheur Childrens Hospital this morning and this time by choice. I mentioned awhile back we wanted a second opinion. Unfortunately most doctors want their own reports and test so after a lot of prayer we decided it was best to go through with that now instead of months down the road. Ansley's seizures have just been a vicious cycle- she does well for a week then has multiple seizures, the doctor will up her medicine and then the process starts all over. Maybe I've not given the meds enough time to work but we need to know we are doing the right thing for Ansley and it really is - medicine regulation issue. Many people have told us about an outstanding doctor here at lebonheur, I have spoken to his nurse many times before this weekend, finally Monday I called her in desperation to help me and she said come on in and they will do their complete work up to get us some answers. She is on the Neuro floor in a seizure room with cameras to have her on video to see her seizures happen. Today Ansley had an MRI again, many labs drawn, and hooked up on the EEG machine(test of brain activity). The doctor came in today and spoke to us for 30+ minutes, he came right in and sat to talk. I immediately knew we made the right decision. He came back tonight to check on us and give some info. Ansleys MRI looks great and so does her EEG thus far. Which means many things- her seizures are not causing shown residual effects to her brain. Her brain is still functioning great and actually doing things past her age level. He expected to see some signs of seizure activity even when she wasn't seizing but nothing. He then said its hard to believe these are seizures since he hasnt seen one. Therefore he has to see one on the monitor. We have seen them and there is NOO denying these look like seizures. So tomorrow the will stop her medicines to help induce a seizure. So right now we are praying for small quick seizures for the doctor to see. Thank you for your prayers and please continue to remember my sweet girl!!!