Day 11

Playtime with Uncle Bud! He is looking pretty pale today:-(



We thankfully made it safe and sound to my aunt and uncles last night. The driving was a little nerve racking but God protected us and here we are. Sammy had an ok day today, it seems as though he rallies in order to be able to play, but then turns around and is pretty wiped out and crabby. Eating is continuing to be a huge challenge.
His night last night was pretty awful. I did end up calling the doctors office this morning. The nurse was really concerned and recommended that I take him into the ER to get him evaluated. She then proceeded to warn me how long of a visit it woudl be. She said that she thought he was dehydrated. Then my nurse brain kicked in, I knew that he wasn't dehydrated enough to warrent IV fluids, and therefore we would sit in the ER for who knows how long, exposing him to who knows what! I told the nurse that I really just wanted someone in the office to see him, but she said it sounded more as though the ER should. I decided against the ER with the thought that if things got worse I would bring him in. Thankfully they didn't get worse!
I got a whole glass of milk into him this morning and he had some soup as well. Keeping him nourished and hydrated is a huge challenge. I am so thankful that I have been staying with people who love him too and who are just as invested in getting him better. This is certainly a full time job!
He is just loving playing with Uncle Bud:-)

Recovery Day 10

I can't believe it has been ten days!!! I am so thankful to have ten days behind us towards him being better. Unfortunately we are in another high risk of bleeding phase of the recovery. From day 10-12 is another high risk of bleeding, and with his bleeding disorder we are even more at risk. I know that God will continue to see us through this recovery and that in Him all will be ok.
He slept pretty well last night, he only woke up once. Today his appetite is TERRIBLE! He has lost so much weight I am very concerned. I wish I could lose weight like him (instead of him). He is now complaining when he sits at a kitchen chair that it hurts his back, I am sure it is because there is nothing covering his ribs/spine except the stretched skin:-( Please pray that we can get him eating again so he can put on some weight and feel better. When this whole thing started he was 38 and a half pounds and he is down to 32!!! Six pounds is a lot when you were already very thin.
We ended up getting 26inches of snow!!! It is crazy out there, I will be leaving later today to go to my aunt and uncles, just a town over. I am a little nervous to venture out in this weather though....

Post-op Day 6

Coolest puzzle ever! Auntie Tracy and Uncle Tim and their kids got Sam this awesome dinosaur puzzle for Christmas. We have done it several times each day.


This is Chantal and Andrew's dog "Rake". He is so sweet! It is fun having a dog


Sammy has been playing "Go Diego Go" on my computor


Sammy and Auntie Chantal built a card castle


Sam had a terrible night last night. I was convinced that I had made the wrong decision in not bringing him to the ER. This morning he seemed to have much more difficulty swallowing then he had had previously. Chantal and I made the mistake of looking in his throat. NOT PRETTY!!! We both were completely grossed out. I don't ever recommend looking in someone's throat that has had this surgery! It looks like pus is coating his entire throat and uvula, with scattered bits of green infectious looking material. IT is DISGUSTING!!!! So I of course called the on-call doctor again, and he kind of chuckled. Stating that they tell parents not to look in the throat because it looks so awful, but that what I was describing was completely normal.
His spirits/activity level got better throughout the day. But eating has been almost non-existent. I have been physically forcing him to drink, but I am sure he hasn't had quite enough fluids today. Adn then tonight he finally ASKED and WANTED to eat something. He wanted ice cream:-) And kept wanting more and more. So guess how much he ate? SIX SCOOPS!!!!:-) That will get him so calories.
Thanks for your continued prayers. I would also like for you to pray for my sister's baby Darius, who is now one month old. They are not exactly sure what is going on with him. But he is currently at Children's Hospital in Boston. They are doing lots of testing trying to figure out why he is anemic, has a distended abdomen, is intermittently jaundiced, and has had intermittent vomiting and now is having trouble stooling. Please keep him, his mother Doreen, and all the doctors caring for him in your prayers.

Surgery Day 2

We transferred out to a regular floor today. Sam is still being constanly monitored as far as vital signs and oxygen saturation. He currently has no IV fluids running but there is some discussion whether these will be re-started due to his poor drinking/eating today. He has peed a tiny amount since before surgery yesterday.
He seemed to be much more uncomfortable this morning than he was yesterday. It was pretty tough getting him to take any of his medications. He actually even spit some of them out. We have been trying to get him to drink all day but he just isn't having any of it right now. Praying that he starts to drink again.
We had some wonderful visitors today. Our favorite Child Life Specialist came this morning prior to leaving ICU. He was sleeping and didn't get to visit with her but I did. She was so sweet bringing him balloons, and a little kids laptop and a cute stuffed dog.
We also had a "music therapist" come see Sam today. She just came in and played her guitar and sang for Sam. He got to play the drum and cymbal during this time, and he did well although he was so so tired still

Success!!!

Sam came through his surgery with flying colors! He did really well. They pre-medicated him with medications that would help him clot appropriately and these medications worked really well. He had no bleeding that was out of the ordinary!!! He was laughing as he went away from us due the medications they gave him:-) It was nice to not have to see his eyes roll back in his head and have him go limp in my arms, but I was anxious about not being there for him while he was awake.
The doctor was very surprised to find that Sam's tonsil was "green and mushy." which apparently he hasn't seen ever before! Yes again, Sam has done something another doctor at Children's Hospital hasn't seen!:-) But at least that green mushy tonsil is no longer inside of him. The doctor said that they were much bigger than they expected and they looked like they were chronically infected. So prayerfully this will improve his frequent respiratory illnesses and the apnea.
We were supposed to spend the night in ICU, and had a wonderful nurse. Sam was pretty much out of it for the whole night. He denied pain for the most part. And was loving eating orange and jolly rancher popsicles
Thank you all for your prayers for our little miracle boy!!!

One week!

Officially the count down has begun. One week from today is his surgery. And although I am trying to remain positive and unafraid the things that are running through my mind are sad/hard things...
First the hardest part of surgery for me is when they allow me to go into the OR with him and they allow me to hold him as they put him under general anesthesia. There is something that is just horrifying to watch as your child's eyes roll back in their head and they get limp in your arms.:-( HARD!!! But I truly wouldn't have it any other way, regardless of how hard it is for me, I would never want him to go through that alone.
Second, the whole ICU part of this admission. We haven't been in the ICU with him before (praise God!!!) so I am wondering how he will do. The ICU is such a different atmosphere of any other area. I am praying that it isn't too traumatizing for him. And also that some of our friends/nurses/clowns/child life specialist are able to come see him to help him be more at home while we are there.
Third, the pain! Poor little guy! He has had a cough that has worsened over the weekend and now is complaining of a sore throat. Because of that he hasn't really been eating at all this weekend. I can't imagine how hard it is going to be after the surgery for him. He has already lost almost two pounds since thanksgiving.
And of course there is the whole bleeding disorder part of things. Apparently they will be pre-medicating him prior to surgery with the medication they used prior to the last scope that they did. And he didn't bleed after that so I am praying that the medication has the same affect. I know that there had been some discussion as to whether they would actually transfuse some platelets prior to the procedure. I am not sure if that is the plan or not.
We have been in the hospital so much with this little miracle boy of ours. And he always has the best attitude and a smile on his face. My prayer is that this will continue. The posted picture is one of my favorite pictures of him, it has his personality written all over it. He had just woken from anesthesia and was so happy. He is SUCH an amazing blessing to us, God has given us this amazing gift, and He has given him this wonderful amazing personality. I can't wait to see where God takes him in this journey.

Breath Of Heaven (Mary's Song) - Amy Grant

Sam is doing ok today. He is tired, but understandably so. The coughing/wheezing that has occured over the last few days seems to be improving. He seemed to have a little bit of blood in his stool today, but I am praying that this is not anything and that tomorrow will be a good day for him. I am starting to get a little anxious about his surgery, knowing that it is two weeks from today. Praying that the ICU isn't too scary for him at Children's. Praying that his pain will be well controlled, praying that there will be no hemorraging, and praying for God's will throughout this whole experience, and that I can shine God's light. Going through this Christmas season and the fears and health problems that have been going on with Sam, has really got me thinking about long ago.....
I have been thinking a lot in the last week or so about Mary and Joseph and the thoughts that must have gone through their minds as they learned that they were expecting a child, but not only a child, but the Son of God! As a first time mom there were so many things that I was worried about messing up. And now as I have two children, I look at each of them so often and ask myself if I am doing right by them, if I am teaching them as God would want me to. God bless Mary for her righteous heart, for carrying our Saviour, for obeying God's plan for her life.
Below a song that has spoken to me often through the years. It brings it back home that Mary was a mom just like me, yet she was chosen to carry my Saviour! Enjoy!!!



I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father you have come
And chosen me now
To carry your son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

[Chorus:]
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven

Do you wonder as you watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me

Cousins

Sam and Sophia got to meet Darius today. Sam was beyond excited. Sophia was playing the little mommy as far as covering him and making sure he had toys. And then she wanted him in his bed because he was sleeping. Sam was much more interested in holding him and snuggling with him than I expected. He was asking if he could hold him as soon as we got there, and then whenever he wasn't holding him he was asking to. Even a friend came in to see Darius and Doreen while we were there and Sam said that her time was up after five minutes or so!!! It was so funny. He held him a majority of the time we were there and he was in his glory. He has been asking for about the last six months or so when we are going to have a little baby for him, I am sure that this experience is only going to exacerbate this:-)
We had a relatively uneventful visit medical wise today at MGH. There were some other things going on that I will write more about tomorrow. And then there is the fact that the pulmonogist called while I was on my way home and left a message saying he wanted to discuss Sam's sleep study with me. Now I am trying not to be nervous about it, but I kind of am. We have an appointment with the pulmonologist next week (which is when I was told that he would review it with me), so now that he has called I am wondering if there was something on the sleep study that is more concerning to him and he wants to work on it before next week?
My verse for the day:
Phillipians 4:6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your request be made known to God

Waiting for a Rainbow

Be aware that I am totally in a rough place tonight as I write this. Feeling scared and overwhelmed and sad. I know that God has called us to ‎"do not be anxious about anything; but in everything by prayer and supplication with thanksgiving let your requests be made known to God." Philippians 4:6-7 but today I am struggling with that. I went back to the workman's comp doctor yesterday, he has allowed me to go back to work! PRaise God for that! I am so grateful. There are some pretty significant restrictions which I don't know if my particular job will be able to accomodate, so I have a lot to think about there... but know that God's plan is the best plan.
Secondly due to some funky inflammation that I have in my eye, and the inflammation that I had in my SI joint the doctor is now wondering if I have some kind of auto immune disorder. THIS is where I am totally freaking out inside. I don't have time to be sick, to slow down, or focus on something else. My plate is so full and just the thought of adding more is just completely overwhelming me.
A wonderfully sweet sister in Christ said to me today that when she had been sick and had gone to her Pastor of her church and made the typical comment that so often many of us use "God doesn't give us more than we can handle, but He is giving me too much." Her Pastor then corrected her and said that "God doesn't give us more than HE can handle!!!" This has been so grounding for me today. And although I am so aware of God's awesome power and work in our lives, when something new is thrown into the mix, I forget that God has been handling everything and has been carrying me through the whole time. I never have been in charge of this, I never have been the one juggling all of the things going on in our lives. I never have had to walk alone, and most importantly I have NEVER been given too much that HE can't handle. So as I walk in this, He is giving me peace, I just have to keep making the right choices to give it all to Him.
Sam and I went back to children's today for his treatment. It has been so nice not having to drive into the city, but it was wonderful today to see some wonderful friends/nurses etc that we have grown to love over the last several years that we have been going there. My mom was able to come with us today which was such a blessing. She is so calming for me, especially when they struggle to get his line in, as they did today. Hard to believe that we started doing this when he was 13months old!!! There is a possibility of us being able to continue his treatment out here, can you please pray that God opens the door to where He wants us to be and closes the door he doesnt. Here is a pic of Sam's first treatment, and the second pic is just one from playing the other day:-)

Terrified...

So yesterday was my grandmother's funeral. Sam slept later than normal and then came downstairs complaining that his belly hurt when he walked, and he was visibly uncomfortable. I pressed on his stomach which greatly increased his pain. To say at that moment that I was terrified would be the understatement of the year. As a nurse my first thought was appendicitis, and then of course my brain flew threw thoughts of bleeding issues is he needed it removed, it rupturing and him having a septic infection which he wouldn't be able to fight off, etc etc... It was horrible.
I quickly made the round of calls to his doctors. And waited extremely anxiously for them to call me back. Thankfully our primary called back and I was able to speak with her on the phone. She was wonderful as usual. We ran through all of his symptoms, and my fears. She reassured me multiple times that she thought he would be ok as we went to the funeral. She also researched where I should go (in relation to the funeral) if something happened while there. She made sure I had all of her numbers to get her immediately if needed...
We then went to the funeral and she said we could come immediately after regardless of time to see her. And that is what we did. Essentially once we saw her was that it was his colon that was inflammed/irritated. After speaking with her we decided that it was ok to be at home, and again was given a bunch of things to look for and to call her if there were any issues.
Today seemed to be a better day today. He isn't eating much at all, but there have been no explosive stools, and no fever. He has pretty low energy and I feel like he is kind of pale but all in all he is doing better. And Dr V being the wonderful doctor that she is called tonight to check on him, and again said that if I needed her to give her a call.

IVIG friday:-(

I must say that this friday was one of the worst IVIG days EVER!!! It was a fiasco from start to finish. It was a terribly long day. We got there and they called in an anesthesiologist to start his IV. It was literally a bloody mess. I ended up going home (less than 5 minutes away) since my friend was there to change my bloody clothes, and get a clean outfit for Sam. RIDICULOUS, we both had to have wardrobe changes after a doc starts an IV.
Next the crazy medicine was NOT there for hours. We were supposed to start at 8am, and the medication didn't arrive until almost 1pm. Needless to say it certainly was a long day. I think just the tension and stress of the day made my back just throb.
Each time we have the IVIG they check Sam's liver enzyme levels. One of the side effects of the IVIG is that it can elevate the liver enzymes, which it has been doing. It has always been mild, but this time some had been slightly worse, and some slightly better. I am thankful that some of the levels are better, and praying that they will all get better.
In GOOD news Sam weighs 35lb 8oz!!! He has been doing really well in the last two weeks or so with eating! It is so wonderful to have him eating well, and feeling hungry and having a desire to eat without having any negative side effects. He has been on the protonix for a few weeks now and it seems to be doing very well to help him:-)
I have only one pic that I took. My little sister gave SAm a Nintendo DS and he thinks it is the coolest thing ever, I cringe to see him use it. But I guess occasionally is ok.

Preschool BULLY!!! REALLY????

Uggh so discouraged for poor Sammy. He had complained about one specific kid twice now so I said someting to the teacher about it. She said that this particular kid was pretty much a one to one (meaning there is someone watching just him becasue he is such a handful) but that they would pay special attention to him. Well unfortunately Sammy came home and has now said that the kid hit him! So now I kind of don't know what to do. I already told Sam to ask the child to keep his hands to himself, if he doesn't have anything nice to say, say nothing at all, etc etc. But the physical stuff really bugs me. I will mention it again wednesday but I don;t really know what to tell him to do if it happens again???

IVIG, ENT and a WEDDING!!!

ENT:
Yesterday we went in and saw the ENT at Children's. It was a great appointment. They are hoping that we won't have to take out the adenoids. His nose/sinus' looked really good. His ears had no fluid in them. We will go back in december to make a decision, I guess a huge piece of that will be whether he has any sinus infections between now and then...
IVIG:
We came in for IVIG today at Heywood. It certainly has not gone as smoothly as I would have hoped. After multiple attempts for the IV, they called the anesthesiologist in to place it. He got it in on the first try, but it was a very bloody IV start. Sammy got pretty upset about this, especially because it got on his socks.
My baby brother is getting married tomorrow!!! I am so excited and can't wait. His fiance' my future sister is so wonderful and we are so thankful to be adding her to the family. Sophia is the flower girl and I can't wait for that either. BUSY BUSY BUSY!
Have a blessed weekend!!!

A new plan

I got a call from the hospital where they were going to do Sammy's scope next week, they are now thinking that they shouldn't do it there, and that they should actually do it in Boston. With his history of the hematoma they are concerned that if there were any complications that they wouldn't be able to handle them at this hospital, the strange thing is is that it isn't this tiny little rinky dink hospital. It is Newton Wellesley which is a relatively large hospital. I will get a call back from them on monday to confirm the new plan
He seems to be doing well today. He spent the day with his grandparents, and had a good time at the lake with them. I unfortunately have no pictures of this. Sophia and I went to a playground with her little friend Tristan today. She had a fun day too!!!

Potty Training Chronicles Day Five and Heywood IVIG

Sammy and Carol (at his birthday party)

Today was NOT a good potty day! Sam had his IVIG today at Heywood, and therefore Sophia was with a friend. She didn't go on the potty once while there.:-( I am disappointed but oh well.
Sammy did well today with the IVIG. Nurse Carol was there and he just loves her. He went running down the hall and jumped into her arms, it made me so nervous, since her due date with baby number 3 is tomorrow, and I was afraid that she would get knocked over. She got the IV in on the first try, the labs were drawn easily. Sam complained all day that he didn't feel well, and actually stayed in the bed all day. He said he was so sick everywhere. He had a period where both his temp and heart rate increased but then they normalized again. I am not sure what will happen with the IVIG, if we will end up switching brands or something else.
Poor little guy stayed in the bed all afternoon, but when my sister Deanna got there he totally perked up and climbed all over her for a few minutes. Hoping that whatever is brewing will be averted since we got the IVIG today.

Mount Monadnock

Sammy and Savannah, I wonder what their future will hold?




Snack time




Matt helped Sammy with some of the harder parts but can you believe my Sammy climbed HERE?!?!?










Love this picture of Matt and Sam together!!!

Matt went with Sam, Ivan and Savannah and hiked Mount Monadnock yesterday! I am so happy that Sam got to go on a hike with Daddy, and that Matt got to do something enjoyable:-) It sounds like they had a good time. Sam was completely exhausted when he got home. Matt brought a big backpack that Sam could ride in if he got too tired, but for the most part he did the whole hike himself:-) Can't believe my baby is hiking mountains now. Mount Monadnock is 3,165 feet (965 m) tall. Still can't believe Sammy climbed most of this himself and then came back down.

Cardiology

Well I hate to sound whiny and complainy but let me tell you that cardiology appointment was a complete waste off time. The nurse was fabulous and seemed very concerned when telling her what had been going on with Sam in the past several months. The cardiologist on the other hand, wasn't in the room for five minutes, didn't listen to the whole story, just quickly placed his stethescope on Sam's chest and declared that none of this is cardiology related. That's all fine and good, but how do you know??? Mom has significant heart problems and you can't HEAR it with a stethescope!!! Anyways good I hope he is right but it doens't seem as though he did a good job to rule out the issue.
I am finally starting to feel better. Went to an acupuncturist and that made a huge difference in my lower back. A lot of people are afraid of acupuncture but this is my second time and both times I have gotten really great results. I just wish it wasn't so expensive, or that insurance covered it or something. Oh well, at least it is better.
I haven't taken any good pics in the last few days but hopefully today can get some good ones of my little munchkins. Sammy went to the campground yesterday with Matt's parents, but unfortunately the weather was terrible and he was bored and Matt had to go get him. Better luck next time I guess....

ENT update

Well we went back and saw the ENT from CHildren's today. I am not quite sure how I feel about the appointment. WE went there thinking that we would get the date for his surgery for the tonsils and adenoids and to get the results of the sleep study. WEll the results of the sleep study were good, so they are saying there is no brain involvement for the apnea episodes, and that there is no obstructive sleep apnea. But now he is wondering if there is some kind of cardiac cause. So now they are trying to get us in to a cardiologist as soon as possible. I got a call from the primaries office saying how they wanted us to go to Children's instead of MassGeneral because we could get seen sooner. So now I am wondering what they were told and why it has become like a huge priority to get him seen quickly?
The other thing is that we will return in two months to the ENT to determine when they will remove the adenoids, or if they will at all....It is ALWAYS something with this little boy of mine:-)

Sammy's 4th birthday party

I can hardly believe that my little baby boy is just about four years old! We have had such an incredible journey with him. I feel blessed to call him my son, and I can't wait for the wonderful plan that God unfolds in his life. With all the craziness of the upcoming weeks we celebrated his birthday a little early, and as you can see he didn't mind one bit....



When we asked Sammy what type of birthday party he wanted he said that he wanted a monster truck party. I was kind of concerned thinking that we wouldn't really be able to do much with such last minute planning. But a friend of mine from the hospital made this awesome cake, and it tasted good too:-)






Our niece Ava enjoying Sam's cake:-)


Sophia and Daddy enjoying Sam's cake


Sammy liked it too:-)


Blowing out the candles (not sure why these crazy pictures posted in mixed up order)



My dear friend Carol from the hospital who is also our new IVIG nurse:-) As you can see Carol and Sammy have a special bond


Monster Truck Pinata (again not really sure why these pictures posted in the wrong order)





Sammy and his little friend Kaedan. They are both little fish:-)



Julianna with one of the coolest squirt guns ever:-)


Sophia thinking about the pool, but never actually getting in


My beautiful niece Allayna