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
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......