Home Again, Home Again, Jiggity Jog!

Dad, Mom, and me leaving the hospital!

Hello Everyone! I returned home from the hospital! It is so great to be home, and hang out with Boscoe again! Unfortunately, as soon as I got home, some of my same problems arose that sent me back to the hospital in the first place. I was having a really hard time eating, so Mom, Dad, and Julie were getting worried, and were trying to think of answers as to why I ate so well in the hospital but not at home. Some of their hypotheses included: 1) maybe the temperature affects my appetite; 2) maybe the water source affects the taste; or 3) maybe I'm allergic to something at my house. We even thought we may have to replace the carpet ... which my mom wouldn't be too opposed to! After about an hour of conversing, they decided to research my formula on the internet. The results they found were astonishing! It turns out that when I was prescribed the Portagen formula, the health care professionals didn't inform us that the dosage on the can was different from the prescribed dose! So, for the past week, Mom and Dad have been feeding me some very THICK stuff! I tried to tell them this, but they just didn't understand. After they all realized the probable cause, a million different lightbulbs popped up in their heads. No wonder I don't like to eat at home, and only at the hospital! No wonder I have a risk of being dehydrated! It was crazy how all these problems I have been having are finally making sense!

Me telling Julie how awful that Portagen stuff is

It has been approximately an hour since we have come to this conclusion, and I already consumed my portagen more efficiently than I had been. My parents were happy about finding a probable solution to my problem, but are still quite upset that they had to do their own research to find any answers.

So, I am signing off now with hopes that I will continue to show improvement, and aspirations of becoming a detective some day.

Hello Everybody!

Love,

Lydia

Oh yeah.

I give aunt Julie one of my million dollar smiles

With all this hospital business over the last couple weeks, I forgot to let you all know what a big girl I am.

I now weigh over 10 lbs!!

Can you believe that I even managed to gain weight from my pre-operation day until the day I left the hospital (the first time).

Pre-op weight: 9lb. 5 oz.

Discharge day: 10lb. 3oz.

If I had gained that much weight in that short a period of time before surgery, my parents would have definitely baked a cake!!

Love you all. The hospital is really quiet at midnight - but I'm about to eat another meal here in a couple of minutes.

Once again. With feeling!

Hey everyone, I just wanted to give a shout out from The Children's Hospital once again.


I had another appointment on Wednesday morning and a few things came up that concerned my carddiologist. After finally realizing that there may be more things going on in my little body than just some sensitivity to my 'slim fast' diet, Mom and Dad decided that it would be in my best interest to go back to the hospital for a few days to see if the Dr's can decifer exactly what treatments I need to get back to 100%. Mom and Dad finally got to the point where they felt like all of the variations on food and such were becoming more of a science experiment than a treatment for my condition... they decided to implement some help.


My cardiologist is also concerned about the following things concerning both my general health and the status of my newly configured heart:

• She found a little more fluid (effusion) around my lungs (a normal after effect of surgery) than she would like to see by this time following surgery.


• Because I'm not very interested in my formula, my hydration levels were a little low.


• There is a little more leakiness in the surgically repaired valve on the left side of my heart than they had originally observed following surgery.

So, those are the three main concerns and the problem is that they all seem to depend on the next for things to improve as a whole.


My poor eating habits are causing dehydration and my medication for the lung effusion is a diuretic which means that it's flushing fluids from my body - meaning that increasing my dose of medications for the lungs would dry me out even more. I have to prove that I can eat at least 16 oz of Portagen every day in order to keep my fluid levels in check. If I'm not able to do that, we'll be forced to administer a feeding tube - so far, I'm eating like a champ in the hospital... I ate over 17 oz yesterday and I'm on my way to another good day today.


The Dr's think that in addition to the acid reflux and the bad taste of the portagen that the fluid around my lungs could be causing me to have shorter meal times because of a lack of comfort and energy keeping my food intake low. So there's your problem: I have to eat more to be able to take my medicine and I have to take my medicine in order to make my feeding more comfortable - that's why Mom and Dad figured they needed a little help.


As for the leaky valve.... I've been put on some medication for that as well. They think that the medication should be able to keep that under control - if worse comes to worse, I would have to have another follow up surgery, but not for some time.


Anyway, Mom and Dad are encouraged so far with my eating progress and my vastly improved mood - I'm beginning to act more like my usual jovial self as treatments seem to be doing the trick - I've even been flashing the nurses some smiles.

I have a bounce chair in my crib to help me sit up after meals to help with my acid reflux issues. I'm laughing at my bumble bee friend hanging out on the rail of my crib.

If everything continues to go as it has to this point, they're thinking I'll be able to go home already tomorrow.... unfortunately, if I'm not discharged tomorrow, I'll be here for the weekend since things come to a screeching halt on the weekends as far as administration goes (admissions are ok, but discharges are hard to come by until Monday).

Nothing can take my smile away, not even my pink tape covered IV line.

I'm actually pretty glad that I've been in the hospital for the last day and half so that Mom and Dad can get some answers on my condition before going home again.

I discuss everything that's been going on with my bumble bee and bunny friends.

Since I've been here at the hospital, my Aunt Julie came to visit. She got here late last night and she'll be here until Sunday. I love having her around, it means that I am held almost constantly!

Today, Gena and Koen stopped by to see how we're holding up. It was really fun to see them - we like seeing other faces during the day besides those of medical staff.

We had a nice visit this afternoon.

Hopefully my next update will be made from home and I'll be saying how great I feel!!

Love you all! Lydia

Another case of the 'Mondays'

Well everyone, it's been a week since I last let you know about post surgery life. It seems that it's good to be home, but I've got a few kinks to work out.

I'm having a bit of a struggle with my "slim fast" (aka Portagen - low fat formula) diet... we're not sure if I'm having some acid reflux issues or if my tummy is really picky about the kinds of food I eat (I guess I should really start learning how to express myself more clearly to my parents and Dr's - it's like I can't form the words just right to explain how I feel).

Because of my "slim fast" woes, I had a follow up appointment that went from being an expected hour long engagement to about a four and a half hour ordeal. Thus the title: "Another case of the 'Mondays' - it all began like this:

8:30am - arrive at Children's Hospital for x-rays....9:30am finally receive x-rays (big fiasco with Kaiser insurance and Children's hospital to blame).
9:35am - check in for our 9:30am Cardiology appointment - which we would have been early for beside the afore mentioned road bump.
10:00am - finally see the Dr's - they voice their concerns about my lack of dietary zeal, hoping that I'm not getting dehydrated and thinking that I may need some Zantac to help me with a possible case of acid reflux disease (they tried to give me Zantac after surgery, Mom doesn't think I ever actually took it - moments after administering it, they would find it on my shirt...hmmm).
10:00 - 11:45am - continue with the discussions which included the Dr's throwing out the idea of admitting me again as an inpatient... Mom and Dad quickly shot that down and said they would try as many things as possible to get me up to speed again without having to see me in the hospital bed again so soon - however, they need to prove that they can get my fluids up in the next few days in order to keep their end of the bargain. The Dr's then requested that I have labs done once again to rule out any crazy infections...so down to the lab we trekked.

Just to show to what lengths Mom and Dad are willing to go to get me to eat my 'slim fast' - they added cherry Kool Aid (Dr approved of course) to my formula... I really liked it from the get go, but proceeded to deposit it back onto my shirt (and Dad's) shortly there after.

Noon - Mom and Dad check me in at the lab.
12:30pm - they finally called me back to get my blood work done.
1:00pm - after two failed attempts at finding a vein and a call from Ivan for reinforcements for the blood draw, they were finally able to do a finger prick in order to get the blood samples they needed to fulfill the required tests.
By 1:15pm Mom, Dad and I journeyed back to the car in a bit of a daze, not to mention that I was hungry!! My parents were not expecting such a long stay and had not packed enough Portagen for the WHOLE morning - so there we all were, thinking, "hmmm... The Dr's want me to be eating more, but because of them, we were far from the sustenance I needed!"
Well, once we got home, things began to look up.... we were all back in our familiar environment and best of all, Boscoe was there to welcome us!

Boscoe says, "Where have you guys been, I've been worried sick!"

Since we've been home tonight, my eating seems to be taking an upward course, but it's only been about eight hours since we arrived back at home. My parents are hoping that we can keep this up so that I'll be getting the allotted amount of calories and fluids for the day. Otherwise, I am being very pleasant for Mom and Dad - I've found that my swing has become a loyal friend (as long as the batteries hold up).

See, you can't get me down for too long just because of a digestive mystery.

I hate to leave you all thinking that things are really rough, my incision is healing nicely and I got the stitches taken out from the chest tubes. I'm returning to my adorable little self minus an eating related episode or two per day.
Thanks again for all of the positive thoughts and prayers being sent our way.
Tomorrow is another chest x-ray and Wednesday we will review those findings with our cardiologist to see if our actions to that point are proving effective.
Bye for now!

My reaction to finding out about more procedures in the next few days... yikes!

My 3 month photo shoot

Hello everyone. I would like to share some of my 3 month pictures that my friend Kristi took after the Buddy Walk on September 7th. She does a great job don't you think?

Here they are:

By the way, we survived our first night all on our own without the help of nurses and monitors. I managed to keep my oxygen tube in my noise for most of the night even though I have to admit that I try to pull those silly things out often when I'm awake. We all slept fairly well and had a good nap this morning after my breakfast. I think we are all starting to catch up on much needed rest. Mom and Dad gave me a bath around noon and it looks like my incision is healing very nicely already. I can't believe it's only been just a week since I was just out of surgery because it feels more like a month. Thanks again for all of your prayers and support and I hope that you enjoyed the pictures above.

Blog at ya later,
Lydia

Day 7, Got to go HOME!

So as the title for this post says I am home now but let me catch you up on the last few days.

The last time I updated things I was awaiting the results of an EKG test for the conduction thing that was seen in the last EKG. Well, this was just a miss measurement and was determined not to be a problem. Yippy! We all were very glad to hear these good results.

Another thing that I left you with on the last post was that I was waiting to get my second chest tube out after the x-rays were taken. Unfortunately they wanted to leave the tubes in on Day 5 (Sunday) for a little longer to see if any more drainage was going to come out. They ended up not taking the tube out until Monday late morning. I have lots to say about Monday in just a bit.

Later on Sunday afternoon after another thrilling victory by the Broncos, I had some visits from some of my friends. Darin, Ali and their boy Sam stopped by and brought us some nice flowers for our room. Later, my friends Paul and Heather stopped by and got us dinner. They also told us that they picked a date for their wedding. It was good to hear about stuff going on in the outside world.

Mom holds me up so I can watch the Broncos game.

Now for Monday, that was quite a day. If I were to put a title for Monday it would have been "a bad case of the Monday's". I had one procedure after another for what seemed to be all day. None of the procedures were fun at all. As we were all sleeping at ~8AM there was a knock on the door and it's the echocardiogram technician ready to do a 45minute long look at my heart so that the doctors could see if the repair was successful and how my heart was doing. I did okay with this test because I pretty slept during the whole thing but then started to get very hungry with about 15minutes left. I think Mom and Dad slept a little bit during this time as well while they were holding me still. Without any time to breath the lab tech game up to take me down for an x-ray on my chest. The x-ray test required me to have my arms pulled all the way above my head, not the best thing to do after open heart surgery I might add. I also had the last chest tube and pacer wires pulled out after the x-ray results showed no more fluid in my chest cavity. They gave me Morphine prior to the pull but I think they actually just gave me sugar water because I was not happy at all, and for quite some time. I also had a failed attempt at getting a blood draw via a heel prick (two pricks actually) even though my parents warned the nurse that I have not had successful heel pricks in the past. Later they had to find some place left unpoked on my little body to poke me for a vein draw for the blood test. Again, this was not fun but at least it only lasted a minute or two instead of the 20 minutes for the failed heel pricks. The new formula has also caused me to be a little more backed up then I usually am and needed a suppository to help move things along. A necessary evil that ended up doing the job, and quite well as a matter of fact. A group of doctors stopped by to discuss the results from the echo that was done early in the morning. They noticed that the pressure was a little bit high in my right ventricular side and as such I would need to stay on oxygen for a little while after going home. With all of the possible outcomes with such an involved surgery we will take this. I don't like having the little tubes up my nose but we'll see how that goes over the next few weeks. After all of the stress and business that went on during the day we all slept very well that night.

Man, Monday was a long day!

I needed a swing to help calm down after my blood draw.

Tuesday Day 7. We all woke up feeling a little better about the day ahead. We didn't know that we were going to be discharged from the hospital for sure but there were a few hints from a few nurses and doctors the day before. I just thought they saw that we were all a bit down and thought this may make us feel a bit better. Mom and Dad prayed that we could all have the strength to make it through how ever many more days that we needed to be there and we took on the day with a renewed energy.

Our energy was tested pretty early on when I had to go down to get another chest x-ray. Dad helped me with my arms and I did very well. I stretched my arms way above my head and did everything they needed without one little peep. I knew it might be the last one and just got er' done. Later the doctors told us that the x-rays looked good and that we could go home.

We got set up with oxygen from the hospital and a referral for a gas company near our home. We were given prescriptions for the medicine that I needed and had one last discussion with the doctors and the nurses. We were free to go. I thanked them all for helping me to be able to live a more active and longer life.

We are out of here. Thanks doc's!

I'm wearing an outfit home that I got from one of my Mom coworkers Joey. It goes pretty well with the quilt on my bed don't you think? By the way, we got to take the quilt home as a "parting gift" from some volunteers at the hospital.

It's great to be home and to see my pal Boscoe. My friend Leah and her son stopped by with a wonderful dinner. It was perfect timing as we had just got settled in and realized that we were starving. It was a very nice gesture and we really appreciated it. We have such wonderful and supportive friends. Now that we are home Mom and Dad have to figure out how to take care of me without the aid of the nurses. I think they will do fine even though they may be a little scared. They have become use to looking at the monitors to see if my oxygen tubes are still in and now I just have to try and not pull them out when they tickle my nose. Needless to say we have a bit of adjusting to do with the oxygen but what a big step and what a relief it is to be home.

I'm telling Mom how glad I am to be home.

Thanks everyone for your prayers and thoughts over the last week. Mom, Dad and I all felt it and God gave us the strength to get through it and come out on the other side ready to take on the next challenges that will come.

We cannot wait to go to sleep in our own beds. I can hear it calling to me now. Goodnight everyone.

Love,
Lydia

Day 3PM "The speed bump", Day 4 and Day 5AM

Sorry that I have not been able to keep you all updated on my status for the last two days but on Friday afternoon (Day 3) I hit a little bump in the road on my way to a healthy and speedy recovery.

The bump in the road was that one of my Lymphnode vessels was knicked during the surgery and as such I was leaking the fat from my milk into my chest cavity. The doctors were glad that they detected it as soon as they did and I am now on a special low fat formula and will be for anywhere from 4 to 10 weeks. I sure miss the good milk that my Mom makes for me. Dad kids with me that I am on the ultra slimfast diet. This is such a change for me since my goal up to surgery was to get as big as I could and now I'm on this fat free formula. I quess that's just how it goes sometimes and hopefully the little micro leak will heal soon and I can get back to my favorite food of choice.

Dad comforts me.
So I stayed in the CICU (Intensive Care) on Friday night so that the nurses could see if the special formula would help to clear things up. Friday night was a big night because my Mom got to hold me for a little bit and my Aunt Lauren and Uncle Jason stopped by to visit. It was not for very long but it was sooo nice to be held and to see my Aunt and Uncle. On Saturday AM the nurses and doctors were happy with the progress and felt that they could remove a few tubes. This was not a fun thing but it meant that I was close to moving out of intensive care and on to progressive care.

My Aunt and Uncle visit while I'm held by Mom.So on Saturday afternoon we made the big move up to the 9th floor where the CPCU (Cardiac Progressive Care Unit) is. I still had the right chest drainage tube in and I'm still on oxygen to keep my blood saturation levels up. The good news is that by being up on the 9th floor I don't have continual IV drips going and it's nice and quiet in our own private room. They allow us to have more visitors on the 9th floor - no more having to rotate to get everyone in. We are also able to all sleep in the same room at night which is very nice. On Saturday night my Mom and Dad got to hold me for a little bit longer than she did on Friday night. It was very soothing to be back in the arms of my parents. I think my parents liked it a little bit as well.

Dad holds me while Mom prepares my little nest in bed.
I ate well during the night and we all got some good rest. Sunday AM my G-ma and G-pa stopped by on their way back to Iowa. It was extreemly nice to have them around. It really meant a lot to me, my Mom and my Dad.

After I had my morning feeding I got to go for a little ride in my super sweet Radio Flyer wagon down to the chest x-ray lab. They want to look at my chest cavity to see if they can get this last chest tube out of me. Once the tube is out I will be able to be more mobile and can go on a few more wagon rides around the CPCU.

Hanging out in my cool red wagon.

I still have a few more tests to do today. One of these is another EKG to measure my hearts electrical workings. I would appreciate your prayers since the doctors want to do this test since there was a little conduction glitch that they saw in the last EKG that may need special attention and treatments. They have not seen anything in the continual monitoring of my heart beat that would suggest that anything is wrong. One doctor said that the previous EKG could be a miss reading and they want to run this EKG again to make sure that it's not a real problem. Thanks for you prayers that my heart does not have a conduction problem.

I must head back to bed to get some rest. I will need it if they pull more tubes out today. I feel like I have one foot out of this place and I'm that much closer to going home and completing my recovery.

Hello everyone! I feel better.

I love you all very much and hope to see you soon,
Lydia