Sleep Study and Other decisions to make

Well, not sure exactly what happened with Torah's Sleep Study last Thursday but here is what I do know. We got to TCH to check in around 1pm to have her admitted (so that insurance would pay for everything), and even though our Doctor herself called 'bed placement' to reserve a bed - no bed was reserved and of course the hospital was packed that day. Around 4 pm they finally got us up to the floor and into a room where we waited till 8:30 when we were taken down to the 'sleep lab' for the night. Torah tolerated them hooking her up for the sleep study and also she had an EEG done as well, so they had to hook all the little probes up to her head to monitor her brain (they wanted to know if she was having seizures while she slept). The shut the lights off at 9:30 and for the next two hours . . . Torah screamed and cried (I felt bad for the little boy next door who was having his study done at the same time). I crashed and slept like a rock and come 6 AM they were waking me up and un-hooking Torah. The gal that monitored Torah all night said that she did destat down to 63 % and they did have to put her on oxygen just to keep her above 88 %.
I thought that we were going to get to go home Friday afternoon, but the doctors were just not happy with what had happened and wanted to figure out why or what was causing her oxygen levels to drop so much. So, Friday night and Saturday night they put her on 0.5 liters of oxygen and watched to see if she would drop. We also met with the ENT doctors and a pulmonologist to see if they could come up with a diagnosis or a solution to the problem. The ENT doctors thought maybe it was her tonsils - and even after sticking one of their cameras down her nose to see if they could find anything - all they could come up with was her tonsils were bigger than they should be, but they do not think that they were the problem and so they did not want to go in a remove them just yet. The Pulmonologist listen to me talk about all the 'asthma' related issues that Torah has dealt with since birth and did not diagnosis her with asthma but said that she defiantly has asthmatic related issues . . . so he prescribe an inhaler for her and I am hoping that it will help break up the stuff in her throat and also keep her from wheezing at night. I have not heard the official results from the doctors about the Sleep study or the EEG . . . will try and post when I do hear!

Sunday morning before we left, Torah had a type of 'swallow study' done to see if she was refluxing and if her nissen had come undone (was done back in Jan 08') - it is where they take part of the stomach and wrap it around her esophagus to tighten it up and keep her food from coming up if she does reflux (or throw it up) and all that is to keep her from aspirating any food into her lungs and getting pneumonia. According to what the radiologist told me - her nissen has loosen and is not doing what it was intended for so we were referred onto the surgeon that put her g-tube and nissen in.
Now comes our BIG decision:
The Surgeon called me this morning to give me our options. He still wants to see Torah before making a finally decision, but here are our 3 options (all 3 have good and bad):
Option 1: Do Nothing! Good part is maybe her reflux will go away (he told me that she only had the reflux because when they tighten the esophagus it keeps air and gases from getting out - otherwise know as burping). The bad part would be the reflux stayed around (like it still currently is) and she retches - making food come up into her throat - and then she aspirates it into her lungs, gets pneumonia and gets hospitalized.
Option 2: Revise the Nissen - all the surgeon would do would go back in through her belly button and laparoscopically redo the nissen. Good part is really not much except giving us more time to figure out if we want or do not want to do Option 3. Bad part - she keeps struggling with reflux like she is right now and maybe in a two plus years we are right back at we are right now.
Option 3: Bypass the stomach. He tried explaining it to me over the phone telling me that it would make so much more since if I saw a drawing . . . but here is pretty much what he told me: They would go in and disconnect her stomach from her esophagus and attach her small intestine to her esophagus. To me it sounds like one of the 'stomach by-pass' surgeries that they do to help overweight people. Good part would be that she would never struggle with reflux ever again. Bad part is it is very permanent and we could never go back - this part is bad if one day Torah decides to finally eat food through her mouth. The doctor told me that she could have some fluid and a little food, but she would never be able to eat the calories that she needs and would have to be supplemented by the g-tube. I wonder about the g-tube though too since it feeds her directly into her stomach right now . . . what would they do if we did choose Option 3??

I have a lot of questions right now and I know I need to do my homework plus talk to as many people as possible before making this decision. We can schedule an appointment pretty much any time to meet with the surgeon and then he would go from there with whatever we decide. This is really when I wish we had a "Owners manual" to help us figure out the right choice with her or even to tell us what she might be like in 5-10 years from now . . . but since we don't I will turn to God once again and hope that he will help Bob and I make the right choice.

Sleep Study at TCH

Tomorrow morning I will be dropping the boys off with a friend to watch and then taking off for Denver to admit Torah as an inpatient so that she can have a Sleep Study done with an EEG. I wish that while we were in KC at Childrens Mercy - they would have just done all of this, but for some reason it was not done and so we will be making yet another trip to Denver. I am not going to be able to meet up with her regular doctors on this "short notice" trip, but we are meeting with an understudy and he will get all the info to our normal doctor. They are doing the EEG to see if she is having any seizures while she sleeps and maybe that is what is causing her to destat while she sleeps. I do not what her to have a seizure, I also want the doctors to actually catch her having one when she does have an EEG done . . . it is all in God's hands what happens.
I did get her Special Care doctor to finally order us some oxygen to have at home in case she has a seizure. I am hoping that after this sleep study, the doctors will order her to be on the oxygen at night too. When ever she is an inpatient - when she sleeps - she will destat into the 80's and even sometimes into the 70's. I am just surprised that no doctor has ordered it for her before now.
I will post an update as soon as I hear the results. I am hoping that this is just an overnight visit and they don't find any reason to keep her longer than that.

In the next few weeks and up coming months, Torah has her first dentist appointment (which she will be fully sedated for) and also her surgery on her hips. I will also be complicating things - on June 2nd, I will be having the rod in my right tibia taken out (they actually wanted to do this on this upcoming friday, but I had to respectfully decline). Not sure of the recovery time, but the doctor did inform me that I will be sore for awhile . . . Oh, I cant wait!!! LOL

Things are looking better

The doctors extibated her and took away all breathing support since Torah was about to do it for them anyway. She did fine for about 15 min before she kept having apnea spells. After going out to eat and coming back - the doctors had decided to put her on a CPAP machine to help her get past the apnea spells . . . sad to say that it did not help much. Plus every time she yawned or coughed she would loose the seal around the mask and the machine would beep at us (constantly!). Bob and I talked to the resident and tried to tell him that we thought she was having small seizures (staring spells - plus her eyes were so dilated and did not respond fast), but he did not seem to think that seizures were the cause. Sometime around midnight the doctors did rounds and the head doctor checked her out while she had one of these spells that cause the apnea and decided to put her on a seizure medication to help stop them (if they were seizures) . . . sure enough the medication helped but only after her blood pressure dropped to 80 over 30. She did bounce back and had a pretty restful night. After shift change this morning - our nurse Amanda that we had yesterday too - was tired of Torah trying to take her CPAP mask off and had the Respiratory Therapist come in and disconnect her from the machine. She has done good since then with only a few time of her holding her breath and destating down in to the 80's.

Sounds like the Neurologist are going to come talk to us this morning and then get Torah moved up to their floor and out of the PICU maybe around noon today. Just praying that the doctors can keep an open mind and maybe help us with all of this new information. Thanks so much for all of the prayers . . .

Yet another seizure

Sad to say that Torah had yet another seizure. We had come home to Kansas for Bob's grandmas funeral and while we were at her burial, Torah started to have a seizure. We started at a Clinic in Blue Falls and they ended up shipping her to the hospital in Marysville where the flight crew from Children's Mercy in Kansas City came to pick her up.
The seizure started around 3:40, and at that time it was more like one of her staring spells. By 5:00 (that is when we arrived at the Marysville ER) it was the worst seizure I have seen. The ER staff gave her meds to stop the seizure but it pretty much just slowed it down to where her eyes were the only thing twitching. During the flight to CM, Torah did have another 4 min seizure and was given more meds to stop it. The flight crew felt that they did not need to intibate her for the flight because they had her breathing under control. The flight took off and Bob and I headed to KC. By the time we arrived around 9:30p - the doctors had deceided that they wanted to intibate her since her air way was being blocked by very thick saliva and secretions.
As of right now the doctors want to start getting her off the breathing support and see if she can breathe on her own, but every time they put it on the CPAP mode, her respitory dips down and they have to start her back up on full support. Not sure what the plan will be if she can not breath on her own yet . . . will keep you updated and post more when I can. She also has been running a high fever since arriving here and they can not seem to get it to drop yet . . . not sure about that yet either.

Follow-up after seizure and apt's at TCH

It has been a few weeks now since we were at TCH for Torah's bi-yearly check-ups with her specialist. We started off Wednesday the 10th with her Brain MRI (it pretty much took up the whole day). From what her doctors can tell, nothing has changed since December 2008 when we had her last one done. I guess this is good news!
Day two was filled with 4 different appointments. We went and saw Dr. E with the Special Care Clinic. She helped us change Torah's Previcid medication to better control Torah's reflux and it has worked until today. She was concerned about Torah's Blood Pressure since it was high so she ordered some blood work to check and see if something was causing it to raise, she also ordered a new genetics microarray test to see if they can find anything new in Torah's DNA that may have caused all of this. Dr. E agreed with Bob and I about maybe bringing Torah down to TCH every 4 months instead of every 6 months since she was having seizures a month before we were scheduled to be there - in other words, Torah was out growing her anti-seizure medication. As of right now, Torah is in the 95th percentile for her height ( 40.5") and weighed in at 36.8 lbs. I did ask Dr. E about getting a sleep study done for Torah to see if she needs to bee on oxygen at night and this was only brought up because when Torah is an inpatient and is hooked up to all the monitors - her O2 levels always drop when she sleeps and the doctors are always asking me if I have her on oxygen at home . . . "No, should I?" is my response. So soon after getting home we did get the study done and are waiting for the results.
Our next appointment was with Orthopedics/Rehab (2 doctors at once is nice). They did a xray of her hips and also of her spine (with and with out her back brace on). Nothing was mentioned about her spine - so, I am guessing that it has not got worse and the brace is doing its job for the most part. The Ortho doctor jumped right in about her hips though. They have been watching them for the past year and were not too worried until now. He wants to do a Varus Derotation Osteotomy (VDRO) procedure on her and we have scheduled it for the end of July. The procedure will consist of them cutting a piece of bone out of each femur so that they can line up the femur (thighbone) and the hip. Below is a picture of a dog after it had the procedure done (it was all I can find):
Dr. C said that she will not need to be in a cast after the surgery since she really does not have any risk of falling (this is a good thing since Torah does not like to be restrained in any way). She will be at TCH for 3-4 days after and it will take about 6 weeks to fully recover. I have talked to Torah's OT and PT and they both agree to up Torah's therapy around that time to help her get stronger. Dr. C also will be doing a Iliopsoas Lengthening (I was told this is pretty much done every time they do a VDRO).
We also saw Dr. P in neurology and she was happy with what the doctors did when Torah was flown down after her status epilepticus (this is what they are calling her seizures)

Our new year with the Waiver starts in June - and I will be looking at getting some new equipment for Torah. Most of which will be in the form of seating and the biggest thing that we need is a wheelchair since she has outgrown her KidKart so fast. With her also starting school - we need to get a chair for her to sit in there as well.

I feel like I am forgetting stuff , but I guess if I remember it later I can always post again. I know I don't get on here much, Tyler seems to keep me busy - and if it is not Ty, then either Torah, Jace or Bob needs me . . . so goes a mom's life!

I am looking forward to some friends that are coming to visit us over the Easter week - I always love having company around. Hopefully the weather stays nice and we can do a lot outside!

I hope everyone has a wonderful and Happy Easter!

Seizure #3

Torah being moved from PICU to the 8th floor

Torah shortly after they removed her breathing tube

February 19th will now stand out in my head for two different reasons now: first is my anniversary to my wonderful hubby (this would be our 5 year mark), and second is now my daughters 3rd seizure. Sad part is, is that Bob and I actually thought that we were going to be able to get away from everything for a mini-vacation . . . ok, it was just a thought!

We had a trip planned to Jackson Hole, Wyoming - still in the state, but on the other side of the state and only about 8 hours away from home (and TCH in Denver). We dropped the kids off with my cousin Bethany and her fiance Clay in Laramie and planned on being gone Friday-Sunday. Needless to say, we were back in Laramie at 6am Saturday morning.

Torah had her seizure around 10pm on Friday and knowing how scared Bethany and Clay must have been (since I get scared myself), I am so thankful that they had Clay's brother Cy, who is a paramedic, to call on. They were able to get her over to the hospital in Laramie and the staff there was able to get the seizure under control. Because of the weather, the Flight For Life team would not be able to come get Torah and take her to TCH in Denver until the next morning. Bob and I arrived in Laramie around 6:30 and we then waited for the next 4 hours for the flight team to arrive. We then left so that I could get in the van and drive the 2 hours (plenty of time for the flight team to get Torah to the hospital). Torah did not arrive at the PICU until around 3:30 and I was not able to see her until 4:30.

Once at the PICU at TCH, the neurology team did a EEG on her to check for any type of seizure activity (but yet none was found - go figure). They also checked for any kind of virus and that all came back negative as well. So yet I have a very "healthy" 3 year old girl that has long seizures for no unexplained reasons.

We did get out of the PICU today around noon and she has been doing great except for a small lingering fever. I am hoping that the doctors will let us get out of here tomorrow - but not sure yet and will not know much until the morning rounds. If by chance they do keep her a few more days, I am going to see if there is any chance that they can get her Brain MRI done now instead of on the 10th (not holding my breath though). She also got to sleep in a "Big Girl Bed" - or a normal hospital bed instead of a crib and I kind of think she likes that!

This seizure was a lot like the last one that she had back in August (from what I gathered from my cousin). Thinking that a fever caused it, but what caused the fever???? The neurology team upped her Keppra (seizure medication) from 300 to 400mg (was 150mg last summer). Granted she has grown a lot in the past year and the doctors say that they still have some play room withe the dosage - so we will see what happens.

Thanks so much to everyone for all the prayers and thoughts! This is never easy, but God always knows what He is doing and somehow give me the strength to get through it all.

Will post some pictures when I get back home.

Torah turns 3 !!!

On February 4th - Torah turned 3 years old! I can not believe that she is 3. Last year went so fast for all of us and with her being so healthy the majority of the year, it made for a good year.
She still has been having issues with her reflux acting up every weekend, but overall - she is doing really good.
In March, we will be making a trip back to Kansas to see all our family and friends and show off little Tyler (who is not so little anymore). The last two days of our trip we will be back in Denver for all of Torah's check-up appointments and another MRI of her Brain. I'm still hoping for some answers, but also not expecting any either.

We hope everyone has a blessed Valentines day!!