Sounds more complicated than expected....

The most recent time we were at the hospital, over the winter. Just hanging out and taking a nap


Posing with one of the nurses. He has them ALL wrapped around his finger8-)


Talking to Daddy on the phone last year when he had the scope done that lead to us really knowing that he had a bleeding problem...


Since we couldn't go play outside, Meme' took him for a ride on his IV pole8-)


Thrilled to pieces with his clear diet: He was so excited to eat as many popsicles as he wanted

Had a lengthy conversation with the charge nurse where Sam will be having his endoscopy on tuesday. She was confirming with me the details of the plan, and going over the hematologist's plan to pre-medicate Sammy for the procedure to help prevent hemorrhaging. Only I wasn't informed of this plan until this nurse discussed it with me. She also wondered if Sam would be staying overnight just to be observed which makes sense but I didn't even think about this, and GI doc didn't mention anything about staying over, so I am not sure what the plan will be now. If they are going with the hematologist medication plan we have to go in a couple of hours earlier so they can give him the medication via IV, if they don't then we just have to go in an hour prior to the procedure. Sam of course doesn't mind staying over in the hospital, he thinks it is kind of fun. As seen above in the old picture:-)
I am thankful that I will be able to stay with him until he is asleep, so at least he won't be afraid or feeling alone. And they allow me to be with him before he wakes up so I will be there when he opens his eyes. They will be intubating him which always makes me nervous but I know that God will be with him through it all.
It is so strange, this emotion of fear. I know that God has called me to not be afraid. But talking with this nurse tonight has certainly made me anxious. She kept asking me all these different questions about each body system and since the last procedure there have been several new issues that have arisen: the difficulty regulating his body temp, the increased bleeding, the difficulty with swollowing with gagging/vomiting, the apneic and bradycardic episodes....
Trying to F.R.O.G- Fully Rely On GOD!!!! Ps. 22:8 - He trusted in the Lord, let Him rescue Him; Let Him deliver Him, since He delights in Him!

Playdates and GI update

Taron wore a helmet while Sophia was driving:-)



When we moved we had a couple of rolls of wrapping paper that got torn and wrinkled. I just taped it to the table and let the kids paint it. They had a blast.



I don't even have a title for this post. But wanted to update what has transpired the last two days. After speaking with our primary MD about Sam and the plan to do the scope, and letter her know my concerns, I placed a call to the GI doctor yesterday at MGH. My message essentially said that I don't want to do the scope (unless they can give me a strong argument that they will find the problem) unless absolutely necessary due to his bleeding last time. I am ok with them doing the upper GI/endoscopy but the lower is so scary to me. Of course today the doctor called back while I wasn't home. But it sounded like he totally heard my concerns and agrees with me sort of. He still wants to do the colonoscopy if Sam's diarrhea continues through tues when the endoscopy is scheduled. (He started with diarrhea on saturday).
The last two days he has actually started to eat again which is such a huge answer to prayers. He has actually said that he is hungry.:-) The prilosec still seems to be gagging him, and I am not sure if it is helping him get hungry or if he has just not eaten well for so long he is feeling hungry, or if God has healed him. He is still complaining that something is blocking the food from going down but at least he is eating.
I have been so blessed this week by my friends. We have had several playdates, although I don't have pics from them all. It is such a wonderful feeling to be surrounded by such wonderful women, who encourage and inspire me.

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.

A new plan

Matt noticed last night after Sam had a bowel movement that there was blood. We saw his primary who noted him to have pain in his left lower quadrant, and they tested the stool and it tested positive for blood. So the plan is that we will be admitted to Children's tomorrow and they will put him under general anesthesia and do a colonoscopy and endoscopy with several biopsies. We will not know how long we will be there until after the procedure. If the procedure goes well and things look ok then we will come home tomorrow evening, but if they don't we will be staying for a few days. Please pray for him and for his doctors for their wisdom to do what is best for Sam.

Spending time with Meme'

SIGH.....

Sammy with his new friend Keegan hanging out in the infusion center at Children's
Hospital. Everyone was so wonderful as always. They gave us hugs and Sam was so
happy to see all of them. But BEYOND EXCITED to meet Keegan!!!





Hmmm, I know it has taken forever to get this post up but it has been nuts. (sorry Tiff)
Let's start with the positive: Sammy has met a new friend and I have too. We met Keegan, his mom Laura, and his Dad Bobby. It felt like we had know each other forever. It is amazing how having a chronically ill child instantly bonds you with people that are in your shoes. Sammy woke up this morning and was begging to go to Keegan's house and play again. WE are hoping to get together next week! WE can't wait.
Now on to the other not so fun stuff, essentially Dr B wants to wait and see what happens with Sam's IgG levels and basically see if he continues to get sick. I can't tell you how disappointed and frustrated I am with this decision. I was stressing out and anxious about yesterday's appointments thinking yes we are going to have to restart, and that was just anxiety producing, but now I am more anxious as we "wait" to see how sick he gets! His blood work will be back in 7-10 days and I guess we will start to form some type of plan at that point. Whether it is we wait and see how he does or restart IVIG because they are low I don't know. I was getting to the point of acceptance and thinking that it wouldn't be so bad, and I wouldn't so scared of him getting sick if we did it again. And now well now we just wait....
His GI doctor was pretty disappointed that we didn't call him with this last bleeding episode and to be honest I am feeling horribly guilty that I didn't. I wish that I would have now. But when we got the second opinion from the other GI I just called her right away this time. But essentially what he is saying is that the next time he bleeds that I need to call him and he will admit him to Children's that same day, they will do a bunch of cultures and blood work, wait for the cultures to come back and then do colonoscopy/endoscopy, and possibly more invasive surgeries depending on what those show. So again we wait.... He had lost weight again which is discouraging he is now 29lb 10oz at 3yrs old!!
Miss Sophia on the other hand the doctor was thrilled with! She gained nearly two pounds since the last visit. So she is now 21lb 11oz at 18months. We will continue the periactin and pediasure the way it is for about six more weeks, and then start to wean her down.

Friday at Childrens

Our friend Khadeisha from the Transfusion center came to see us while we were here








Getting ready to head home

Sam was scheduled to go to the OR at 0930, I think we went down there around 0915 or so but then didn't actually go to the OR until like 10:15 or so. They took his hospital bed down there and so I rode in the bed with him because he was scared. I actually went into the OR with him and stayed with him until he was unconscious. I don't know if I could do that again. Although I knew that he would get limp in my arms and that his eyes would roll back in his head, it was still quite a disturbing thing to see that happen to your own child. I cried. He was so amazing in the OR. They were having him blow in the anesthesia mask, and even as he was getting sleepy he kept trying so hard to blow in it. It took a little over an hour and then we got to go to him in the recovery room. He looked so little and pitiful. The medication made him look brite red in his face except around his mouth was very pale. He was trying to eat a popsicle when he was in recovery but didn't quite have the coordination back at first. These are pictures from when we got back to our room. We had to stay for a few more hours after so they could monitor him. Then we gave him a bath and headed for home.

Children's Hospital

Pictures from when we first arrived


The calm before all the poking and prodding started






All went well at the hospital. He is a trooper as always. All the nurses couldn't believe how good he was. He didn't really cry when they put the IV in and he cried just a little bit when they put the NG tube in. They said they had never had one go in so good/easy before. The GI doctor told us before the procedure that he was hoping to find nothing in there, and that this is just chronic diarrhea that we are just going to have to deal with. After he came out of the OR he said that everything looked okay, that there was no allergic or inflammatory process going on, but that he sent several biopsies and we will have to wait about a week for the results.
Sam did fantastic. He kept asking to go home, and fussing at times, wanting his sister or whatever but did really well. He cried when Mom took Sophia and cried when it was time to go to bed on thursday night. He woke up practically hourly that night. Poor guy, ended up have more than a liter of fluid in his belly, his belly got all distended and hard. He basically then just exploded out both ends.
EVERYONE at Children's was fantastic. I feel so blessed to have them so close by. All of the nurses went out of their way to help take care of us and keep Sam as comfortable as possible. One of them went to take out his NG-tube and becuase he said Ouch she just couldn't do it. She said they could take it out when he went to the OR. She said she just couldn't hurt him.
The room we stayed in had a fridge (which wasn't great for Sam, since I couldn't feed him anything and he kept looking inside) but it worked for me to store my milk for Sophia. It also had a small little tub that he took a bath in just before we left. He smelled terrible from several exploding poopy diapers. YUCK!!!!
So now we just wait for the biopsies to come back and we have another appointment with a special type of GI doctor called a motility specialist or something like that in october.