Playground fun

We got to have a playdate with Keegan today! It was totally a last minute thing but worked well in our favour. We drove in to Concord and had lunch and then walked over to a playground that I played at as a kid:-)
We got an appointment for our sleep study today! I am kind of shocked actually as I had spoken with them yesterday and they said that it would be a long time from now but that once they had it booked that we would be on the cancellation list and hopefully get in sooner. And then they called this morning and have it scheduled for SATURDAY!!! It kind of stinks that it is 4th of July weekend and we certainly had some plans but I am so glad that we have it so soon.
We also got the apnea monitor yesterday FINALLY! I thought that I would be able to sleep more once we had this but I am not quite so sure now as it goes off so frequently. But at least the anxiety that goes along with wondering if he is breathing ok is gone.
This week I have really been thinking about my faith and how there truly is no fear reason to be. I know that God has special plans for my special Sammy, I know that His will is perfect, and that He is beside us through all of these trials on earth. And yet in my human nature I am afraid:-( Lord forgive me for being afraid, I know that You are above all of this and that Sammy is in Your perfect hands, and I thank you!!!

Hematology

Today we went in and met with Dr Grace and the head of the hematology clinic at Children's. The visit went well. She seemed very happy with Sam's weight gain, height and the bleeding that has significantly decreased since we have last seen her. She was very surprised when the doctor from MGH recommended not giving Sam the benadryl or the bentyl that he had been on, because both of those could affect platelets. She seemed very impressed with how he has been doing lately related to the bleeding.
The visit went very well. Essentially they will be giving Sam some medication called Amicar that will help him have the scabs that will form in his throat stick together better. They will also be giving him another medication called Vasopressin which will help his body to not dissolve the scabs, and then thirdly if there is any type of bleeding they will transfuse platelets. She said multiple times how so many kids bleed after having their tonsils out (and this is supposed to make me feel better?!?!?) but then went on to say that the likelihood of Sam bleeding is less because they are pre-treating him. She said that we should kind of expect that he will but that they are going to take every precaution to help prevent it. All in all a good appointment:-)

Fireworks

Tomorrow we go into Children's again to meet with Sam's hematologist to finalize the plan of what they will do and how they will treat Sam when they do the surgery to help prevent and treat any bleeding...








Gardner is celebrating that it is 225years old and has all sorts of festivities planned for the summer. Today they had a little celebration at the college. There were several thousand people there I would guess. We suprisingly saw several people that we knew and also met people there too. The kids had a blast playing with their friends. Sophia didn't enjoy the fireworks, she kept saying that she was tired and wanted to go home. Sam watched them intermittently but wasn't overly impressed.

Boston Children's Museum

WE had such a fabulous time today. Sam really had a great day which is exactly what I wanted to happen. He loves Roberton and Julianna as they are "big kids" and he wants to be like them. WE rode the train in and of course that was super exciting for him as well. Sophia was sick last night so we ended up not bringing her with us, but we will definitely be going again soon and I am sure she will love it too.
PS the pictures posted in the reverse order then they occured




My little man two fisting his ice cream


Yum!!!


The Construction Zone: Sam loves this whole area with all of the equipment and climbing equipment. Last time we went he had alot of difficulty climbing this stuff but no struggles this time. What a difference a couple of months makes?









The Art Expo: they do all these different crafts and activities. Sam loved coloring on the paper with a crayon and then painting over it to see the white spots show up, like his name:-)




More Construction zone pictures....




Arthur: this area was all dedicated to Arthur. There was the kitchen, school, plane, and this camping location:-) WE loved them all even though Ididn't take all the pictures of each area.


The Bubble Room: this is by far my favorite place at the museum. There is just something that is so intriguing about them. And Sam had such a blast here, make enormous bubbles, and making one around himself







This climbing structure went the whole height of the building!!! It made me so nervous watching him way up there and being so far away but thankfully our friends went in with him. This thing is 3 stories tall!!! HE absolutely loved it. He did seem a little nervous when he was really up high though





Riding the train with Julianna

The bad part of our day: we won't have the apnea monitor until monday. So I have to wait out the weekend before we get it, and monday we go into Children's to see his hematologist which means we might miss them coming and have to wait until tuesday:-(

Thankful

Goodness, I have gotten so caught up in being terrified that I have forgotten so much of what God has blessed me with! I am surrounded by so many wonderful friends and family who are going out of their ways to help us and I am just so thankful. Ashley made us a wonderful dinner today, and Sara took the kids so I could take a napy (but of course I was too busy freaking out and couldn't sleep) but it was still wonderful to just have some quiet time. Today has certainly been a nice reminder that I truly am not alone and that God has put some wonderful people in our lives to help us through these trials.
We still don't have the monitors for Sam:-( which is so frustrating as I am so exhausted and staying up for days on end isn't good for any of us. The apnea and pulse oximeter monitors should be here tomorrow, which is great but I have to work tomorrow night so I won't get to sleep then either:-( I also didn't hear from Children's regarding the rest of the testing but am hopeful that tomorrow we will hear.
Trying to do some fun activities pre-surgery so we will be off to the Boston Children's Museum tomorrow provided all goes well tonight:-)

ENT

Well we had the much anticipated ENT appointment today with an amazing doctor at Children's. He actually listened start to finish with Sam's history as well as the most recent scary events. He listened to my fears regarding the bleeding disorder and the concerns of being so far away. He isn't 100% sure what is the cause of the breathing issues lately so he is going to do some testing first but if surgery is the plan he went over it all...
He said before he even examined Sam by the sound of his voice that his adenoids must have been very large. The doctor seems like he is excellent and very thorough. He let me ask all my questions and took the time to explain things to me. Essentially once the testing is done and the determination is made as far as how urgent the surgery needs to be done: he will have a plan from Sam's hematologist, and will pre-treat Sam with blood products pre-surgery. Sam will then spend a couple of days in the ICU after the surgery, and then to a regular hospital floor for a few more days at the minimum. He then would like for us to stay locally so that we are close to Children's in case of complications, and thankfully we have friends and family out there. So although I am absolutely terrified and overwhelmed at the thought of what the next few weeks are going to entale, I am so thankful that we have a plan in place. A plan that seems safe for Sam, and cautious and well planned.
He then went on to say that he wanted to clarify the exact type of apneic spells that he is having, so that he won't be doing surgery if it isn't the true cause of the respiratory distress. He is wondering if his apnea is central apnea or obstructive apnea...

FROM WEB MD:

"What is central sleep apnea?
In central sleep apnea, breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with serious illness, especially an illness in which the lower brainstem -- which controls breathing -- is affected. In infants, central sleep apnea produces pauses in breathing that can last 20 seconds.

How is central sleep apnea diagnosed?
If you have some of these symptoms, or if a family member or bed partner notices that you stop breathing while sleeping, you should talk to your doctor or healthcare provider about the possibility of sleep apnea.

Your doctor is likely to perform a physical examination, take a medical history, and recommend a sleep history. The next step will likely be an overnight sleep study called a polysomnogram. This test is performed in a sleep laboratory under the direct supervision of a trained technologist. During the test, the following body functions may be monitored:

electrical activity of the brain
eye movements
muscle activity
heart rate
breathing patterns
air flow
blood oxygen levels
After the study is completed, the technologist will tally the number of times that breathing is impaired during sleep and then grade the severity of sleep apnea. In some cases, a multiple sleep latency test is performed on the day after the overnight test to measure how quickly you fall asleep. In this test, patients are given several opportunities to fall asleep during the course of a day when they normally would be awake.


What is sleep apnea?
Apnea literally means "cessation of breath." If you have sleep apnea, your breath can become very shallow or you may even stop breathing while you are asleep. This state of not breathing can occur up to hundreds of times a night.

What is obstructive sleep apnea?
Obstructive sleep apnea (OSA) -- also called obstructive sleep apnea syndrome -- occurs when there are repeated episodes of complete or partial blockage of the upper airway during sleep. During a sleep apnea episode, the diaphragm and chest muscles work harder trying to open the airway. Breathing usually resumes with a loud gasp, snort, or body jerk. These episodes can interfere with sound sleep. They can also reduce the flow of oxygen to vital organs and cause irregularities in heart rhythm."

Sleepover with Keegan

Thankfully Keegan and family allowed us to sleep over prior to our appointment with the ENT. As usual Sam had a wonderful time. He seemed to have slept well, and really enjoyed playing with a big kid. Laura was a great support system for me as I was voicing my fears about the possibility of Sam needing his tonsils out. Sophia stayed with a friend, and had a good time as well while we were gone.

Heywood Hospital

Sam wanted to monitor his Ninja Turtle

Last night Sam and I spent the night in the hospital so that they could monitor his breathing, oxygen and heart rate. The monitor was going off frequently throughout the night stating that there was low heart rate, or low respiratory rate or none, and his oxygen level.
What the preliminary results showed was that during the 6.5hrs that they were monitoring him asleep that his oxygen level dropped 29 times! I am not completely sure what the ramifications of this are. I know that our primary was going to call Children's and discuss these results with them. I know that there will now be more testing and more appointments but I am not completely sure of what exactly all of that will be.
WE go to Children's tomorrow and at that point will hopefully be devising a plan to follow regarding the tonsils/adenoids, as well as now this respiratory stuff. So again please keep him in your prayers

Father's Day

Daddy from the day we first met we are so blessed to have you! WE love you so much and are so thankful for your love, and unending hard work!!! WE love you to the moon and back!
Love Sammy and Sophia

Respiratory Distress:-(

So last night I worked at the hospital. I ended up coming home early because it would appear that I have pink eye. Matt told me that he was sitting in the living room with Sammy sleeping on the chair behind him. Matt realized that he hadn't hear Sammy breathing and looked at him and saw that his lips were blue, and that his face was not the normal color!!! So so scary! He repositioned him and he started gasping for breath. I brought him to the doctor today (not our primary, it was the on-call doc) who really didn't know what to do. They checked his Oxygen level while we were there and it was only 94%, which isn't horrible, but it is defintley lower than it should have been. So now I am so anxious about him and all that is going on. Is this related to his tonsils, or something new?!?!?

Update on Sammy

So since the appointment yesterday I was getting more and more anxious about Sam's surgery and was so unhappy with the doctor yesterday. I was talking to a good friend and she said well I am going to contact my ENT and see what he has to say about it. I am just so blessed that she did that. I must have spent 45minutes on the phone today with the new doctors staff. THey were all fabulous. And said I can call anytime to ask questions or voice any concerns. They have us scheduled to see the new doctor next wednesday and I am just beyond thrilled. At that time we will make a game plan related to his bleeding and immunology concerns. I am just so relieved to know that this new doctor will work with me and these crazy fears I have. And that he will do the absolute best for Sammy!!!
We had a fun playdate today at a Christian camp in westminster. The kids had so much fun. Sam played in the water most of the time, until I made him get out because it was freezing. He also was JUMPING off the dock!!! Sophia was so cute today, she mostly just wandered around playing with different little kids. She would get her feet wet, and I convinced her to come swimming with me!