Results are coming... 3 hospital stays.... omg

Sorry it has been so long to write- there has been so much going on - you wouldn't even believe this is my life!  So Nick had his surgery - had issues during surgery and luckily he came out of it ok... Opposite of all we were told he was sent home against our wishes by the PACU nurse at Childrens hospital.  Much to our shrigrin we were on not even 2 hours before rushing Nick's non responsive little body back to Boston by ambulence with a 104 and rapidly climbing fever! While totally dehydrated- he had to get poked 7 times to get a vein while the poor thing screamed his head off.  My husband I took turns to comfort him because it takes a big toll on you as a parent. 

This was Nick getting his blood work- he didn't even cry - just a pout! he is such a strong little kid!  Since the recovery from the surgery which by the way did give him pnemonia again... once home he was healthy for about a week.  Then you guessed it - Pnemonia.  This time it was bad they admitted him right away.  Three days on more heavy meds- poor Nick ended up with night tremors and seperation anxiety all over again!

Thankfully he is on the mend again!  Tomorrow we go to Boston to see if there are any results from the cilia biopsy and or if they have any ideas as to what is causing all of these issues with constant pnemonia.  As you can see he is a pretty happy little boy!

Me and my baby!

When it rains it pours!

this is Nicks stay at the hospital at home- Kylie was so happy to visit with her brother!!  She didn't want to leave...

Sibling Love

Finally getting out of bed!

Daddy snuggles

Step 1 of our journey with my baby!

For tomorrow: good news. bad news. good news is surgery will last between 2 and 4 hours. bad news is they won't make repair until later due to nick having to be in intensive care with a breathing machine as they will be blocking the air way. so this surgery will not be reparative-


Scopes (3) , airway block, (E.N.T. will go into the larynx and biopsy the area....as well as look for the Laryngeal Cleft and tracheamalacia....more concerned with Laryngeal Cleft. Pulmonary will go in, with the airway blocked, scope the lungs, fill the lungs with fluid and slowly resect the fluid from the lungs until completely empty, while conducting biopsies of the lungs, cilia, and bronchi branches (with E.N.T at the same time). Gastro will go in, with the airway blocked and biopsy the stomach, intestines....and one more area ( I forget the name). The doctors will review the procedures and determine what the next step is If it is Laryngeal Cleft, then the next surgery will be more challenging due to him having to be on a ventilator and in ICU for several days post-op. Pulmonary is looking for damage to the lungs and whether any damage is repairable....or needs to be resected as a result of recurrent pneumonia. They will not know until the biopsies come back.........gastro is looking at any possible damage from the infection after birth. Concerned about the infection and meds given to fight the infection may have damaged the intestines. (The meds were the right meds.....but just may have caused damage)

Finally Some Answers- and No we are not crazy!

As you all know....we have now been to Boston Children’s Hospital 3 times with Nicklaus. As a result, we are now working with a team of 3 specialists....all of whom are top in their field of pediatric specialties.  (Pulmonologist),  (ENT) , and ( Gastro), have all had the opportunity to view the test results....blood work, etc...and we are seemingly on the right path for Nick.

Each doctor has given us a lot of information....a lot of which is overwhelming at times, but none the less...we are beginning to narrow down the long term issues Nick has been facing since birth.

As you all know from reading my posts...Nicklaus struggled his first week of life. There was the conversation between doctor and parent that no parent ever wishes to have...and that was the reality Nick may not survive the first 24-48 hours of birth....as a result of an unknown infection at the time. The infection was winning the battle early on....but the doctors persevered and worked tirelessly to make sure Nick survived.

Dr. F from the NICU did recommend Boston Children’s Hospital after Nick’s birth, but after discussing the situation with the doctors at our level 4 NICU and the course of treatment all the while keeping in mind I would have been in been in the hospital here at hom and my daughter would be here as well with Nick an hour away…..we decided to keep him here. To do it all over again, we would have certainly acquiesced to Dr. F’s recommendation. The old saying: If I knew then…what I know now…..I would have made different decisions.Decisions were made and they were the best decisions at the time, considering all the factors.  Hindsight is always 20/20!

For the last 16 months, we knew something was just not right with Nick. We knew he was having difficulty breathing. He was continuously sick. Nick was struggling....all the while; we were continuously told this is "normal". The rattling in his chest, the recurrent pneumonia...and his overall health was not something that should have been deemed normal.

Well, after 4 bouts of pneumonia since Christmas Day, we made the decision to go to Boston to see if we were crazy or if the doctors up here were missing something. Well, clearly we are not crazy.

Dr. M was the first doctor we met with for over 2 hours. He had a lot of suspicions as to what Nick was going through...and ordered tests and called in other doctors to work with him. We were sent to Dr. R (ENT) where additional tests were done. While the non-invasive tests were and are promising...it is the unknown activity going on in Nick's lungs, larynx, stomach etc. that can only be determined through a bronchoscope and endoscopy for Nick.

For the average adult, a bronchoscope and endoscope is not a big deal. In fact, these are often conducted in the doctor’s office in an out-patient capacity.

With Nick, there are many issues to contend with:

1) The lack of knowledge as to how he will handle anesthesia

2) His ability to breathe while under anesthesia

3) Surgical repairs to be made while under anesthesia

4) Various biopsies of the throat, lungs, stomach, and small intestine

5) How long Nick will be kept under anesthesia

6) What will be found from the procedure.

Right now, the Gastro doctor wants to be part of the procedure...but if she can't be...we will have to wait 4-6 weeks after his first surgery to allow the Gastro doctor to put Nick under again. So, we are looking at the next two months one this month and next month for the next procedure if Gastro cannot take part in the first surgery. While the Gastro doctor does not think she will find anything...there are some indicators that she may. We will not know until she is able to go in and look around and take several biopsies as well.

So here are the roles each doctor will play during surgery:

1) Pulmonary is the lead doctor. His primary objective is to biopsy the lung....make any repairs necessary...and do any surgical intervention necessary.

2) He is the Ear, Nose Throat Doctor: His primary objective is to look for openings in the lower larynx that is causing Nick to aspirate liquids when Nick drinks fluids. What this means is that when Nick is drinking fluids, fluid enters his lungs and sits there causing pneumonia due to bacterial infection. The objective is to fix the cause of this. There are many causes...the two being sought out right now are:

Tracheomalacia: cartilage in the windpipe (trachea ) has not developed properly.

Laryngeal Cleft: rare congenital abnormality in the posterior laryngo-tracheal wall. It occurs in approximately 1 in 10000

http://www.childrenshospital.org/views/october06/cooperating_for_care_cadd.html

http://www.childrenshospital.org/dream/dream_fall05/reaching.html

http://www.childrenshospital.org/clinicalservices/Site2025/Documents/Robotic%20Surgery%20in%20the%20Pediatric%20Airway.pdf

Dr. R is the leading surgeon in this field and essentially has been influential in surgical intervention in this area here in the United States.

Dr. R will also insert tubes into Nick's ears (minor event) to prevent the fluid from building up

3) Dr.: Objective is to biopsy the stomach area, small intestine and one other area...and surgically repair anything needed (however it is unlikely surgical repair will be needed).

Next up will be Pediatric Orthopedics...and Pediatric Neurology for the nerve in the area of Nick's broken collar bone. There is a lot to this as well...and this nerve could be the cause of some of the symptoms Nick has been exhibiting. We just don’t know yet.

OK....so I tried to be brief...but I also wanted to be thorough. This has weighed heavily on us and the amount of information we have received from Children’s Hospital since March has been far greater than any pediatrician has been able to give us over the last 18 months. We are thankful for this.

So with dealing with all of this I have not been able to write a whole lot so thanks for your support and your patience!

Ok...I will end it here.   Thank all of you for your support and words of encouragement. Also understand that at the same time...when we are nervous....fearful...overtired...or just stressed.....just a simple word of encouragement goes a long way for us......

Country Girl

Country Girl
Thanks to Olga Quinn
Being a country girl means I was thrilled when my husband told me he wanted to start an organic farm with me. We’d lived in the city for years and I was just plum tired of the rat race so when the chance came for us to buy up this piece of land and build our dream house I couldn’t have been happier. I just wanted nothing more than to farm for a living and really make something with my hands to be proud of, you know? Anyway, we recently finished the house and we’re really starting to settle in. I’ve got the curtains up and the satellite star internet service going and I feel right at home. I love going to be exhausted every day and my husband’s actually really coming along with the farming and I think we’re going to be able to make a decent living off it. Who would have guessed I’d end up back on a farm after going off to college and never looking back!

Kids decided for us

Content by Mac Kline

At first, I really could not decided whether I wanted to have Dish Network or Direct tv. I had definitely heard good and bad things about both of them from multiple friends. I think ultimately the kids helped my husband and me to make our decision. Many of their friends in the neighborhood use Direct TV. The boys got to a point where it seemed like they liked being over at their friends’ house more than ours. My husband and I said we had to put our foot down and make sure the kids wanted to be at home too. It is funny that TV had such a sway on the kids hanging out at our house. I never thought that day would come, but it definitely did. It is funny because it seemed like such a competition at first. Now, we see other benefits though and we definitely do not regret making the choice the kids pushed us toward. We get to watch some of our favorite shows once the kids head to bed so it definitely seems like it is a win, win situation.

RSV... inevitable

With all the viruses going around and nasty bugs it was inevitable we would soon be plagued somehow!  This Winter has been very difficult at any given moment one of has had something- no breaks in between!  Ahh the joys of working parents.  Unfortunately my husband who hardly ever catches these colds came down with the super bug- which starts off in the sinus and works its way down to pneumonia!  Four weeks later - he is still hacking up a lung!  Luckily he escaped the stomach bug that I luckily caught along with the kids. Seemed to get me the worst- NATURALLY....

Then it happened ... Nicklaus caught what Mike had- but to Nicklaus it comes in the form of RSV.  Very scary stuff- (see the link on the right banner).  He has been rushed to Urgent care 2 times already- for special breathing treatments and steroids.  He has bad asthma with just exacerbates everything!  He is in great spirits considering.  He has many of his moments of general unhappiness but this kid just never ceases to amaze me.

He is finally stable and breathing- Kylie has escaped part of it but she is still coughing... I am getting the sinus piece now and loading with every vitamin you can imagine just to avoid it.  We will just continue on fumes and pray for the best!!!

Watching It Now

The Author of this post is Kory Dotson



For years, I have resisted the urge to subscribe to cable or satellite television, preferring to curl up with a good magazine, book or dvd. Now with all the excellent programming available on stations that I can’t get over the air I find myself more and more tempted. Not only would I love to be able to watch shows like Madmen and Southland when they air rather than waiting for the season to come out on dvd, I’d feel a little more in touch with reality. Everywhere I go it seems people are talking about what happened on shows that I enjoy but can’t see at the same time. My neighbor recommend I check out http://www.GiveaDish.com/ to look for deals on a subscription. I figure I can afford it with all the money I’ve saved over the years of not paying for television and have even earned it! I’m sure my kids will appreciate it when they come to visit as well but I’m sure I’ll get a hard time from them for not doing it before now!

The Web Page

This is quite the project - I am working on the site but need to get some legalities in order- SOON I will have all that I need to launch www.APinchofGerman.com It is a LONG time comnig and I can't wait to share it with you!  You can go and like my facebook page :O) it will give you an idea of the website....  just search A Pinch of German and it will pull up for you!  If you "like" the page I appreciate it!  Trying to get my concept programed when I am not a programmer is complicated at times... but good bad indifferent and wether or not successful- I must complete it.  That is the thing - get back to checking things of my list.

Excercise program check - and for those that have not tried ZUMBA yet OMG is it great! so much fun!!!  down 30 and climbing :O)

Cooking recipes and writing them up with photos- Check- currently on my facebook and ebay pages...

House cleaned - well we all know that is on going haha

House repairs- done as we can afford

Getting to bed on time- G'Night :O)

Skinny Bits: {giveaway} Cookbooks!!

We are so much alike it is almost scary... I would love them

Skinny Bits: {giveaway} Cookbooks!!: I'm a cookbook addict, I just love the way they feel, love browsing the recipes and looking at the photos. I can spend hours doing looking ...

Newlyweds

Guest post of the week by Deangelo Spencer



When my husband and I first got married we were clueless. We got married young, and had never lived on our own before the wedding. Of course we thought that we were so mature and knew everything. It took us a while to figure things out though. My parents rented us a home they own, so thankfully they were close by to help us when we needed it. They tried to give us our own space, but I still needed them! We had a hard time managing our money, so my mom gave us some great advice on how to keep our finances in check. The first thing we had to do was cut our energy expenses because they were out of control. My mom let us know that in Texas we could shop around for our rates, so I searched texas electricity providers TXU energy and started doing the work. She also helped me learn how to cook a few basic meals so that we wouldn’t be eating out all the time. Little by little, things got better and we were able to sort ourselves out. I’m glad those days are over!