Antibiotics, IVIG and special friends

Sam was so so happy to see his friend Khadeisha. They had so much fun playing with the I-Pad:-)

So I met with Sam's doctor first thing this morning before driving into the city for the IVIG. She said he had very purulent drainage:-( So we have started our third course of antibiotics for this crazy sinus infection that we just can't seem to get past. It is crazy, last winter he essentially had one continuous sinus infection, which is what led them into wanting to remove his tonsils. We then started having all the apneic episodes, and that is what has convinced them to take out the tonsils. But the ORIGIONAL problem is what may prevent us from doing this! Uggghh. A wonderful friend said to me today that this might be God's way of telling us that right now isn't the right time to do this, so I am waiting on His guidance.
We went into Children's today to have his IVIG. They now have a beautiful new unit. We had a nurse that we weren't familiar with but she was wonderful. And of course our favorite child life specialist Khadeisha was there. Sam just loves her. She is going to come visit him when he is in the ICU next week. We are so thankful for her. I am not sure who the actual donor was, but many many Apple I-Pads were donated to Children's Hospital! Sam absolutely loved playing with it. I must admit I was pretty enamored with it myself:-) He played with one almost the entire time we were there.

Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.

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.

PIZZA!!!!!!!!!!!!!

Enjoying the finished product


Our little masterpieces:-)


The chefs


My kids LOVE to make pizza! We just have whole wheat dough, pizza sauce, mozzarella, and a variety of toppings. They just love to do this, and it is a fun way to let them participate in cooking.
In other news I kind of had forgotten about an application I had filled out for some assistance with our health insurance. Well Praise God today we got the answer that it had been approved! I am just so thankful. It never ceases to amaze me how perfect God's timing truly is:-)
Sammy woke up with a rash today. Not quite sure if this is related to the antibiotics he just finished or not, I guess we will see tomorrow....

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.

A new week

So here we are in this new week.... praying that Sam can stay healthy until thursday when he gets his IVIG. It seems so crazy that the last few months he has been definitely not feeling as well and it seems like he has been sick immediately before he is due for treatment. He slept 14hrs last night and is dragging this morning but praying that this doesn't mean anything. He is cool, but not cold so that is a plus. I am fairly certain that he has another sinus infection but we don't want to treat it since the antibiotic may cause the bleeding in his belly again. So we just continue for now and see what happens...
In wonderful news Matt's cousin Andrew does not have a tumor!!! His CT Was negative. They are still investigating what is going on but at least it is not a brain tumor.
We are awaiting ANOTHER snow storm, and I am just sick of the cold, can't wait for the warm weather. I think it will be better for Sam to not have to be workign so hard to keep himself warm. Not to mention we can get OUTSIDE and they can run and play and not destroy the house:-)

Back in a rut....

Well I think Sam is feeling poorly again and am so frustrated. He did just get the IVIG last week so I was hoping for at least another week or so of him feeling well. He had the IVIG a week ago today and he stopped his antibiotics on sunday. He started feeling poorly on tuesday, and has been really fussy irritable since wednesday night. He also has been sleeping extra, and eating poorly. Not sure what is going on but am so frustrated:-(
And then we were supposed to meet with his hematologist on monday and they had to reschedule for February 22! So dissappointed, I really wanted to talk to her and get more answers about this bleeding problem....

Sick sick sick

So we went and saw Dr V today. Sam has bilateral ear infections, a sinus infection and a ton of post nasal drip 8-( I feel so bad for him. The weird thing is that he hasn't had a cough, runny nose, or even complained that his ears are bothering him. Although it is awful to have him sick, this is almost a relief as at least we have a reason for the crazy temperature fluctuations this week. Dr V thinks his body just isn't capable of handling the stress of being sick so it reacts with the crazy temperature fluctuations. We obviously still need to go see an endocrinologist to see what is going on here, but at least we aren't looking at his body being incapable of maintaining his temp with no reason. So we have ten days of amoxicillin, and lots and lots of praying that we don't get C. Diff in the process
I spoke with a nurse tonight who has a daughter with an extremely rare medical condition that almost took her life before the doctors had even determined what the cause was. She was really helpful, and really recommends trying to get in to a geneticist to see if there is anything that they can determine. It certainly would seem that the oddness of his symptoms would possibly belong to some type of syndrome, and if we knew that maybe we could take care of him better.
I am just praying that God continues to lead and guide all of us in caring for Sam. That he is able to continue being the happy playful beautiful spirit that he is and that he continues to thrive.

IVIG

It's official we will return back to the every four weeks of IVIG. Sam's immuno said 3-4wks so we will see how it all pans out. I thought I would feel some sort of relief or something, but I don't. I was hoping that I was wrong and that his levels would come back good and that he would just get better and not need to go through it again. I guess I am just overwhelmed at the thought of doing this all over again...
In HAPPY news we had a wonderful playdate with Keegan today. Sam absolutely loves playing with the big kids and Keegan is so sweet and takes care of Sammy. WE went to a delicious bakery and then took a walk to the playground. It was a gorgeous fall New England day. The playground that we took the kids to is one that I played at when I was a kid:-)
Sam did end up with another sinus infection and is on a fourteen day course of antibiotics. So please pray that we don't get any ill side effects from that.

Colitis it is

Well it would appear that Colitis is the most likely cause of Sam's bleeding and discomfort. Apparently there is a brand new antibiotic on the market specifically geared towards kids, that is for intestinal infections. We had to drive to Shrewsbury last night to get it as that was the closest pharmacy that had it. So we picked it up, I gave him a dose last night which he tolerated well, but then this morning's dose he vomited. I already spoke wiht his primary and we will see how tonights dose goes, and then contact GI tomorrow.
In wonderful news I met someone yesterday (on the phone) whose son Keegan also has immune problems, and the most awesome thing about it? She too is in Massachusetts!!! She will actually be at Children's on monday when we go, so we will get to meet in person. I can't wait:-) It is so nice to talk to someone who just GETS IT! Who has been where we have been, and understands my concerns and stress, and doesn't belittle my fears.

Update on Sammy

Well Sam is continuing to not feel well. Today is his last day on the antibiotics so we shall see where this takes us. He has also been complaining of increased belly pain since yesterday. I am sure the antibiotic is wreaking havoc on his poor system. So please pray for him for healing for his stomach and for healing from the sinus and ear infections

Still sick

Well it seems Sammy may be starting to do better. He had more energy today but continues to have a fever, terrible cough and lots of green mucous. He is definitely in better spirits, and has gotten a little fresh today. A two year old is so much fun sometimes:-) I will take it, over him being lethargic and sick though.
He has been sleeping a ton. And continues to not eat well. At least he is drinking ok. We have been on antibiotics for three days, and still he has a fever so we will call tomorrow if that continues just to make sure there isn't anything else we can be doing.

Bronchitis!

Sam's got bronchitis! And it has really knocked him for a loop. I called the doctors office first thing yesterday morning and they put us in for her first appointment. Have I mentioned how blessed I am with Dr V? She is amazing! We are so thankful to have these guys take care of our family. Anyways long story short he was still running temps to 103 and was very lethargic and wasn't eating at all. He was drinking ok, but I knew that there was something going on.
So we went to the doctor and bronchitis it is.:-( Poor little guy. He is completely miserable. We started him on zithromax yesterday and hopefully this will do the trick. He is so out of it though and has been sleeping so much. I know that this is good, but it makes me nervous that he is so out of it. He was even telling Matt that he wanted to come home when he took him to the lake. He is still running a fever, and has been crying so much. He hasn't been this sick since before we started the IVIG. Ugghhh, I wonder if this means that stopping the IVIG right now is not going to work? I keep thinking back to prior episodes of when he was on antibiotics before we did the IVIG and this is what happened....



PLEASE PRAY FOR HIM!!!

Sophia's first birthday

We celebrated Sophia's first birthday today. It is so hard to believe that my little girl is already one. It was a nice time. She woke up in the morning feeling like herself and didn't have a fever. So we went and celebrated with our friends, this wonderful blessing. People were amazingly generous and we are so thankful. Thanks to all of you for your generosity and for sharing her day with us. Towards the end of the party she started gettting hot again and very fussy. Our primary had come to the party and suggested having the oncall doc call in a new prescription for a stronger antibiotic but when we called him he was unwilling, as he wanted to give the current antibiotic one more day to work. My little angel screamed for four and a half hours last night. A special thanks to Auntie Paula for saving my sanity and holding Sophia that evening. Her temp was up to 104.1 at one point!!!