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.

Trombetta's Farm

Today Sammy and I went and celebrated Keegan's birthday at a wonderful place called Trombetta's Farm. This place has a woodworking shop where the kids can make little projects, an indoor miniature golf course (18 holes), and a party room where they supply the food, drinks, and ice cream cake with their own homemade icecream. Sammy had never been mini golfing before so he really enjoyed that as well as the woodworking.
He was pretty worn out after the day and fell asleep on the way home. He sounds so congested but is unable to get any of it to drain, regardless of anything we try. Not sure where to go from here. His antibiotics for the sinus infection are finished tomorrow but he is still very congested. And has started pushing his face up against the floor again.

More bleeding, more sickness, and more questions

Goodness, it feels like I have too much on my plate and am feeling so incredibly overwhelmed. Sammy started having explosive bloody watery diarrhea today, as well as his gums were bleeding. This is something we have NEVER dealt with before so it has been totally upsetting and scary to me. In the past there has been some bleeding if I brushed his teeth too hard, but today the bleeding was completely unrelated to anything.
I called his primary and told her about the diarrhea/bleeding thinking that she would possibly watn to stop the antibiotic. But at this point she wanted me to call the hematologist and GI. Both of these docs called me back with differing opinions: the hematologist believes that the increased bleeding is related to him being on zyrtec even though I was told that this would be fine for him to be on.:-( So she said to take him off it, and to wait a couple days to see if it gets better. If things get really bad with bleeding to bring him to the local ER. The GI doctor is unsure of what to do right now. I am supposed to call in a few days if he is still bleeding.
So I am not sure where this leaves us with Sam. Apparently we are going to wait this out for a few days as long as he is stable. And pray that all of this resolves.
We are also in the middle of planning/preparing for my grandmother's funeral on wednesday. Please keep the family in your prayers as there are many people traveling from all over. Please pray that Sammy is doing well enough to be ok for the funeral as well.

:-(

It has truly been a rough week. Last weekend my mom went down to virginia as my grandmother was doing poorly. They thought that she would do ok for a while longer, but my mom wanted to be there anyway. As this past week progressed we all realized thIt at her days left before meeting her Maker were few. So we started to try to work out a trip to see her. And I am so so thankful that we did. Sammy and I drove down to virginia through the night on thursday, we arrived at 5am on friday morning. We quickly went right up to bed and slept until 9am. When we woke up we went in to see grammie, it was so hard to see her so week and struggling.
But as we went in to her, and spoke with her she smiled and said our name. Sammy was so sweet, he said "GRammie I am trying to kiss your head but I can't reach." God orchestrated this whole thing that we could all get there. I feel so blessed to have gotten to see her. We arrived very shortly before she died. Sammy brought everything into perspective after she had died when he said "Now Grammie can go for walks with Jesus." It is amazing the knowledge and faith that this little boy of mine has. I am so thankful that he knows who God is and God's love for him. Please pray as we have people traveling from around the world for the funeral this week.
Also please pray for Sammy. It has been quite the rough week with him. Towards the beginnning of last week he started running some intermittent low grade fevers, and had the gasping and struggling to breath episodes. He was extremely congested, and the doctor prescribed an allergy med to attempt to help instead of antibiotics. But unfortunately they didn't seem to help, so we have now switched over to the antibiotics. And now yesterday (during our ride home) he has begun to experience bloody stools again. Praying that the sinus infection as well as the bloody stools resolves

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?!?!?

Tonsils....

Well Sam has had multiple sinus infections in the past year, and although allergy testing has been negative they started him on singulair and flonase to see if that would help with the inflammed tonsils. It would appear that the medication occasionally helps and other times he is so swollen. We follow up with his allergist/immunologist on july 7th and the discussion at that point will be whether he should have his tonsils out!!! I am petrified of this possibility as there is a huge risk of bleeding with this procedure, and since he has the bleeding disorder anyways...
Well anyways the last couple of weeks he has been ok, but last night was AWFUL, he was coughing and having a tough time while he was sleeping. And this morning he has been so irritable and says that he feels like he has a rock in his throat. Waiting to call the doctor and see what I should do. Please pray for my little Sammy:-)

Moving forward...

Well I hadn't mentioned it yet because I didn't know how it would go, but it is looking more and more like we will be able to do Sam's IVIG out here at the local hospital (on pedi where I work) instead of the 1.5hrs plus away at Children's!!! There are still a few more pieces that need to come together but we are getting closer. It will be one less time to spend all that time driving in and out of the city.
Hope that all you momma's out there had wonderful mother's days. I did, although I worked all weekend so I am still quite tired. But I got a fantastic new camera!!! I am still kind of in shock about this.:-) We don't usually do big gifts for mother's and father's days. Typically the budget is just way too tight. But Matt totally decided to bless me this year. Thank you honey!!! Now to figure out how to use it....
Kids are doing well. I am pretty positive Sam has another sinus infection. We restarted the singulair last week, and we have continued the flonase and the saline nose washes so he seems to be doing ok with it. He had started to be very clogged and unable to clear it but he is draining again. I am praying that we can avoid any type of antibiotics and especially a need to go and see an ENT and talking about tonsillectomy/adenoidectomy. I am trying to avoid that desperately. So pray that we can clear this up very quickly please. Thanks!

Our weekend away!!!

Matt and I went away for the weekend and had a wonderful time. It was an eye opening experience, as I realized that so much of my interaction has been focused on the kids. This has been something that happened so easily that I didn't even realize it. The weekend that we did is through an organization called FamilyLife and the program is called "A Weekend to Remember". We learned a lot about each other and ourselves. Check out their website: www.familylife.com
The kids stayed at my aunt and uncles and did very well. The first night Sam fell out of bed, but went right back to sleep. Sophia woke up and ended up in their bed with them. The second night both kids woke up a little I guess, and then they both were in their bed:-) But the kids had so much fun, as they took them to the park, to see the ducks, swimming etc. We are so blessed by their willingness to do this for us. My poor aunt when I spoke with her saturday morning, said that she was exhausted. And they didn't even get them until late friday afternoon:-) It is exhausting though. AND TO TOP IT OFF.... THEY SAID THAT THEY WOULD TAKE THEM AGAIN IF WE WOULD LIKE!!!!! Thank you Auntie Irene and Uncle Bud:-)
I called GI again yesterday and still have been unable to get the results of Sam's capsule study. I am trying to not get frustrated and be inpatient but I am really starting to get annoyed. They had told me that it would take about two weeks when he had it done. Thursday of this week will mark FIVE WEEKS and we still haven't heard anything at all. So please pray that we will get these results quickly.
In other news yesterday Sam had his appointment with his immunologist. All went well. His IgG levels are in a good range, his liver tests are all normal (a side affect of the IVIG can cause some elevation), he has gained some weight (32lb 10oz) and is now 39inches tall. I mentioned per DR V's request about his recent sinus infections and respiratory symptoms since the fall. He has started him on a new medication, called Flonase, to see if that will help the inflammation in his nose and sinuses. He also noticed that his tonsils are very large. He said that if the nasal congestion, and respiratory symptoms don't improve, it might be something in his adenoids and he would then want to do an x-ray to see what they are looking like. So I am praying that this flonase helps to decrease all of this irritation. He actually did allergy testing while we were there, for all the environmental allergies and everything came back negative. Praise God!!!
Off to the playground today, and praying that we hear from GI! Have a blessed day:-)

Endoscopy

Tomorrow Sam goes back into Children's to have the Capsule endoscopy. We got the all clear to do it, even though he has been sick all week. We went and saw Dr V and she said that she is concerned that he is having chronic sinus infections, and is wondering if it is related to the new house?!?!? Uggh how awful would that be. So she didn't put him on antibiotics as they didn't really work last time, we are going to try some allergy medication to see if that works.
Poor little guy can only have clear liquids since noon todya and I could barely get him to eat anything today prior to lunch. He is so hungry, he is enjoying the constant popsicles, but I don't know if I will ever get him to sleep as he is so hungry and wants to eat.
Tomorrow is Sophia's second birthday and I feel terribly guilty that we won't even be with her. She is with a wonderful friend who is planning to do some fun things with her but still I am sad that I won't get to spend the day with her. I will do a special birthday post probably friday night. Can't believe my little princess is turning two!!!!
Sam will be put under general anesthesia tomorrow around 8am so please say some prayers for him. Pray that all goes well, but also that they can find where his intestines are so prone to bleeding and taht it is something that they can fix.