Bleeding

Ugggh! Thought we were past the bleeding risk, and prayerfully we are. However Sam has had two bloody noses in the wee hours of this morning. After two weeks (we are two weeks and two days) bleeding is much less common. I called the ORL and they said that I could bring him in to their ER or to our pediatrician. I am waiting for the office to call to bring him in. Essentially we are going to be looking for a clot in the back of his throat. And if there is I don't know what the plan will be...except that we will be going back to Boston. I know God is in control, but right now I am very nervous. Please pray for Sammy today

I Kings 8:28
Yet give attention to your servant's prayer and his plea for mercy, O LORD my God. Hear the cry and the prayer that your servant is praying in your presence this day.

Two weeks and counting!

It has been a rough two weeks, but I am so thankful to say that God has brought us through with flying colors. Sammy is doing well. He is drinking very well now, and I thankfully have no concerns with his hydration status. Food is still a bit of an issue, but he has STOPPED losing weight! He is back to 34lbs and hopefully I can fatten him up. He is playing and not quite as irritable.
And although he definitely had some apnea last week, last night he DIDN'T!!! They have said that it could take a full four to six weeks to know whether the apnea will be completely eliminated. But for now it is looking positive. They said we would need to repeat the sleep study probably so that I am sure is something we will be scheduling soon. We have pulmonology and immunolgy in the next two weeks. And then GI and hematology in february. ALWAYS something!
I had my follow up for my back today. I had gotten so anxious just prior to Sam's surgery that they were going to give my job away, or say that I had to come back full time the day of his surgery. But as always God prevailed, and everything was put on hold. Today I went and they are going to continue to the partial shifts, as well as the no lifting for another month. I am still awaiting an appointment with the back specialist but I am not sure when that will be
When Sam had his surgery my wonderful friend Meg came with me. I truly don't believe that I could have made it through that day without her. I was a mess, and she was truly God's hand extended to comfort me. She was so thoughtful and brought along her I-pod with some beautiful inspirational songs on it. I was so deeply touched by one of the songs, but sadly could not find it to share with you on YouTube. If you google "How would I know by Kathy Troccoli" it will take you to her site and you can listen. And I highly recommend that you do. THis song has spoken so much to me, the lyrics are below....
"If it wasn't for the times that I was down
if it wasn't for the times that I was bound
for all the times that I wondered how I would ever make it through
all the times that I couldn't see my way and I had to turn to You

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know

I remember all the times I had to cry
and at the time all I could do was wonder why
Why would a God so kind and loving
allow me to go through all this pain
if I could see into the future
then I would know the joy I'd gain

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know

How would I know that you could make a way out of no way
How would I know if I never had a need
Brother I know what your goin through
Sister I know cause I've been in your shoes
But I can truly say that I know what God can do

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs

Lord I appreciate the hard times otherwise how would I know

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....

Chugging along towards HEALTHINESS

We are chugging along with this recovery. It continues to fluctuate, between I think he is starting to do better to I think he is worse. I didn't call the doctors office today so I guess that is a little better right? I think he was up twice last night. His throat is still pretty unbelievable. I still can't get over the mess that it is in there. Even my mother, who is also a nurse was pretty shocked. Poor little pumpkin. We are supposed to get a big snow storm tonight. Up to 20inches or so. Praying that tonight won't be the night that we need to go to the hospital, or any night for that matter!
The pictures are from the last few days that I didn't have a chance to post...

These are from sunday when Daddy and Sophia came to visit. It was so nice to spend time together as a family. It felt like it had been so long.

The recovery process....STINKS!!!!

Sunday was a good day for Sam. Matt and Sophia came to visit which was awesome. It was so nice to actually be a family again. It wasn't too long before the kids were arguing and we were having to referee them. It felt so comfortable:-) I miss being a family and having us all together. Don't get me wrong I am loving spending the one on one time with Sam, and having the time to spend in the evening with my best friend, but I am a wife and mom and I miss being JUST that right now:-)
Monday my parents came to visit which was really nice too. They commented about how thin Sam is, and I guess I hadn't really noticed. I have been complaining recently at the last few doctors appointments that he had been losing weight but I had been reassured that he was ok. But after my parents left I put him on the scale, he has lost almost five and a half pounds! I know that doesn't seem like a lot but he was really thin to begin with, we can see all his ribs, when he sits on my lap he feels frail and boney.:-( Unfortunately this weight loss is probably going to continue for another week or so. He is now down to 32lb and is four years old!!!
Monday evening and night Sam got a little irritable before bed, he woke up twice last night in terrible pain. There was nothing I could do for him to help. I was praying, rocking him, singing, but he was just hurting too bad to notice. I called the doctors office, and they said that increased pain at this stage is completely normal. I am not sure if I agree but I am going to wait another day and see. The poor kid is so irritable. It just seems to me that if plain tylenol was able to manage his pain all last week when we had the surgery, why after a week is it not able to cut it anymore? Ugggghhhhh!!!!!!!!!!
Please pray for my boy tonight. That he is comfortable and pain free, that he can sleep well and feel better tomorrow. And also (the nurses informed me that day 10-14 are the biggest bleeding risks after the first 24hrs) that there will continue to be no bleeding. Thanks!!!

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.

Post-op Day 5

What a week it has been! I am so thankful that God has brought us through this week and so blessed that we are no longer in the hospital. I wish that we could be home as a family and oh how I miss Miss Sophia snuggle time. But we have had a good week. God has protected all of us. It has been tough, but prayers have been answered repeatedly.
Today I am worried as Sam is acting worse today than yesterday. He is eating fair, and drinking not enough. He may be getting sick or something I am not quite sure. Please continue to pray for him as he continues to recover.
I got to see Sophia today. It was so wonderful to see her, but it was terrible when she left. I just feel so sad for her and for myself. The poor girl gets carted off often because of what is going on with Sam, and although we have wonderful family and friends caring for her, it is not the same as mommy and daddy. Please say prayers for her as well.
I got off the phone with my mother a little while ago, and she has said that she is taking my nephew Darius up the hospital. He is a month old now. But last night he started vomiting and today he is continuing to vomit and is lethargic. So please pray for him as well as his mom Doreen. Thank you!!!
God bless!! I will try to post some pics tonight:-)

Released!!!

****UPDATED POST*** with pics
Paula and Sophia came around lunch time. I couldn't stop myself from smothering her with kisses. It was so wonderful to see her. I feel so guilty not taking care of her right now. It was so good to have her here and to cuddle and kiss her. To feed her and take care of her. It was terrible when she left:-(
While they were here Sammy started to get tired, I didn't think too much of it, but as the afternoon wore on I started to get more concerned. I eventually calleed the on-call surgeon (who thankfully was aware of Sam already) and told him what was going on. He said we could bring him to the ER but that there wasn't much he could tell me over the phone. So now we will just go through tonight and see how he does....
Sophia inhaling a pancake:-)




Sammy having some snuggling time with Auntie Paula

They let Sam leave Children's late yesterday! I am so thankful. Of course we do have to stay close by for another week, but just being outside of the hospital is so wonderful. He seems to be ok. We are at my best friends house and he drank about 7ounces of milk last night! It was great. He is also sipping on apple juice and tolerated all of his medicine since we have been here.
I can't get him to eat anything this mornign but at least he is drinking well. He slept fairly well. He woke up twice crying a little due to pain. But quickly fell back to sleep and slept until after nine!!!
I am missing Sophia so much! It is so hard to be away from my baby. I know she has been well cared for but there is nothing like snuggling and kissing her myself. My friend Paula is bringing her to see us today and I can't wait.:-)
I have more pictures to post and will do that a bit later. AGain thank you for all your prayers! Please continue them as he is still at an increased risk of bleeding throughout the next 10 days or so.

Surgery Day 4

Auntie Chantal came to visit and spoil us (AGAIN)

Sam did much better last night! Praise God!!! He vomited his evening dose of medications, but he tolerated a small amount of food, and few ounces of liquid. He slept really well.
I have been playing a game with him today, trying to get him to drink a lot of fluid. THey want him to have the equivalent of what it would take to keep a two to four year old hydrated, even though they think it should be more. They feel as though if he gets the required 24ounces in a 24 hour period that he will be safe to get out of here. So I have been lining up medicine cups (they each hold one ounce) and playing a racing game to see who can drink the fastest. It takes him like five minutes or more to swallow the whole ounce but he is working on it, and we are making progress.
There is discussion of discharge this afternoon or evening if I can get enough fluid into him. THey also decided that the amicar that he is on (to help him clot) could be decreased, as this may cause nausea. So they cut the dose in half!!! I am not quite sure how I feel about this yet, as I feel like if they cut that medication in half he is at a higher risk to bleed. But on the other hand I don't want him vomiting either, but they can always correct vomiting with nausea medicine and IV fluids, but bleeding would be more complicated....
Praying!!!

Surgery Day 3

Can you say LOTS of medicine every 4-6hrs around the clock?!?!? Poor kid has never had problems taking medicine but now is another story

Sammy is doing pretty terrible today. He started vomiting last night and they did end up restarting his IV fluids. He vomited each time he took his medications. They ended up switching some to IV instead of oral. He has slept a good portion of today.
He has a sore on his mouth (I was told it was probably a burn from the instument they used during the surgery) that is really starting to bother him today. We are constantly making him stop touching and picking at it. They prescribed an antibiotic ointment so hopefully it will get better quickly.
There had been some discussion about a possible discharge today if he drank and did well with his oral intake, but now that the vomiting is occuring it might even rule out tomorrow too.
The good thing is that he hasn't had any bleeding. The medication to help him clot has been working well and I am so thankful. Praying for a good night tonight and an even better day tomorrow! Thanks for 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!!!

The Battle belongs....

To the Lord!!!
But for some reason I can't wrap my head around that for the last couple of nights. I feel as though I had a true panic attack last night. AS I watched Sammy sleep, the "what if's" started running through my head and it was devastating. I am just coming to a place right now being completely overwhelmed, exhausted, scared and terrified all at once. I have nothing positive to say tonight. I am scared, unbelievably incrediably scared. Yes I KNOW without a doubt that God is in control all the time, and that His plan is perfect, but what I don't KNOW is what that plan is, what steps are going to occur to have that plan come to fruition, and whether that plan leaves Sammy with no complications from this. The fear that is gripping me is almost unbearable. I feel like I am in this deep dark hole screaming for help and there isn't anyone close by.
My baby is going to be having surgery and it is extremely risky and I am just scared tonight. Please pray, pray that he will be ok, that there won't be complications, and that I can be strong again, because right now, I just want to curl up in a ball and hide. I can't stop the "what if's?" in my head, and I can't stop crying. I can't stop hurting and I just need Godly strength to get me through and I don't have it tonight.

Surgery

We had our meeting at the pre-op clinic. They are going ahead with the surgery on monday. They were quite thorough with Sam's medical history, and seemed a little overwhelmed with some of the oddities of Sam at times. They have quite the significant bleeding plan in place. I felt much better about it after I knew what their plans were as far as the bleeding goes. We will actually go in early at which time he will get medications that will cause his blood to clot normally. This medication will be given IV, and then will continue to be giving every six hours for 2 weeks I believe. So we will be having to wake him once he is out of the hospital to give him this medication. But if it prevents bleeding then who cares right?
So we will head in on monday and just be praying fervently that all goes smoothly that there is no hemorrhaging, that the pain is well controlled and that he recuperates faster than anyone expected.

Sammy is sick:-(

Sammy seems to be getting sicker. He had such a bad coughing spell this evening (about two hours after albuterol) that he actually vomited and was choking. The poor little guy was struggling to breathe. I am meeting his doctor first thing in the morning, but am praying that nothing happens during the night that causes us to need to go to the ER.
They may postpone the surgery! Would you please join me in prayer that they will continue with the surgery? That Sam will quickly get healthy and that they can proceed as planned? It has been very stressful getting all the plans in place as far as a place for Sam and I to stay after he is discharged from the hospital but still needs to be cloes by, and childcare for Sophia, and working my doctors appointments into the mix. I am just wanting this whole process to be completely behind us. Not to mention that the tonsils are probably what is causing all of the sinus infections and respiratory symptoms. So we are really probably going to be sick until they are out.
So I am just praying that they can come out next week, and then we can start the recovery process....AND trasition AWAY from the apnea monitor!!!:-)

Psalm 91:14-16
14. God says, I will save those who love me and I will protect those who acknowledge me as Lord.
15. When they call to me, I will answer them; when they are in trouble, I will be with them, I will rescue them and honor them.
16. I will reward them with long life; and I will save them.

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.

Surgery Date and chest pain?!?!?

Yesterday I heard from the ENT's office that Sam's surgery will be January 3rd. It feels like it is forever far away. I am praying that Sam doesn't have many apneic spells between now and then. I brought my sister and nephew to the doctors office yesterday for my nephews appointment. While there the doctor (also Sam's doc) asked how he was and said I can tell you are not sleeping. Did I look THAT BAD??? Apparently! Anyways I mentioned how he was coughing more, and she said she wanted me to bring him in yesterday. So I brought him in, she said he had some gross looking fluid in his right ear, but that it wasn't infected. When they checked his blood pressure, it was 132/80! It was this high when we had IVIG last too!! Not sure what this is about. She also started him on antibiotics for another sinus infection! So we started them yesterday. I am praying that it helps. I all but BEGGED her to change the settings on his apnea monitor, and I am praising God that she did! She made me promise that I would use it all the time now. So for now we will go back to using it always, and praying that the apnea doesn't get too much worse.
Today he woke up and was complaining of chest pain! It really scared me. OUr primary was off today, but I called the office and spoke with a nurse. She essentially said to wait 48hrs to see if the antibiotics helped with the chest pain! I wasn't loving that answer. So I texted his doctor:-) I know totally terrible that I did that, but I was really anxious. So she had me bring him in to the actual hospital and checked his BP, and also saw her. His BP was 116/54 today, much better!!! But the chest pain just seems to be his reflux acting up due to the antibiotic. Thank goodness!!! I guess I can add this to his list of weird stuff he does, zithromax gives him chest pain.
We FINALLY have snow on the ground! I can't believe living in Massachusetts that we haven't had it sooner. But it is so pretty.

Phew what a week!!!

This week I have certainly been blessed by my faith. With the birth of a precious miracle, and with amazing friends (thanks Meg!), with all kinds of distressing info about Sam, I am just so thankful that God loves me and is carrying me through all of this stress. I can't imagine this life without God.
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)



Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?


Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.


Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.


Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)

Rough Days

This past week has been really rough:-( I try not to focus on the negative, but sometimes especially when I am tired I get overwhelmed. The last 3 days especially have been terrible at night with Sam. Sam has been struggling so much to breathe while he is sleeping. It is so horrifying to watch him struggle just to breathe. Last night I was at our church helping make pumpkin rolls until 2 in the morning, Matt had kept the phone with him just for in case he needed to call 911, if he couldn't help Sam!!! He never actually turned blue (like last winter) but he turned red and then really pale.
I slept with Sammy the last several nights with my hand on his chest, just to make sure he did continue to breathe. Early this morning for about an hour before he woke up I layed there with the sunlight streaming in, and just watched the struggle, and watched the multiple 10+ second pauses in his breathing!
This is SO HARD!!! I am so tired, and frustrated and feeling like there is nothing that I can do to help him. I want this struggling to breath to be over. I want him to go to bed at night, sleep well, and wake up feeling fully refreshed in the morning. I don't want the constant fear of the what if's that we have been dealing with this week.
I am ready to beg for the tonsils and adenoids to come out. If that is going to help him, then I will get over my terrifying fear. I know that God is here with us, that God's plan for Sam and for us is truly perfect, but what I don't know is what that plan is, and I am struggling to deal with not knowing.
These photos were taken by a wonderful photographer. If you are local and want someone to do amazing photos for you that just catches the essence of each person just go to www.sgrahamphotography.com