High Blood Pressure and IVIG

Sam had IVIG today. I am so very thankful that they got the IV in on the first try and things seemed to go smoothly for the first couple of hours. After a little while Sam's blood pressure started creeping up. I am not sure what this is caused from, if it is a cardiac issue developing or if it is a reaction to the IVIG. Either way I am anxious about it, not sure what they will do if he reacts to this IVIG product, as this is our third one. He started on Gammagard, was then switched to Gamunex, and now is on Privigen. Preston was also started on Gammagard and he is tolerating it well so far. Sam's pressure got as high as 140-170s over 85-105! So scary! Prior to letting us go home his systolic had come down to 127, but the diastolic was 98... We will be headed back to our pediatrician on Monday for a re-check. Prayers that it resolves please.

IVIG and more pregnancy issues

Unfortunately the unit where Sam gets his IVIG is closing soon. I am still so heartbroken about it. It has been so wonderful to go and have the same nurses always care for him in the same room, with the ability to have friends come and spend time with him during the infusion. I am still unsure of what we are going to do next because of the unit closing. This time we went and they got the IV right in and auntie Sara stayed with Sam while I dropped Preston and Sophia with mom as I had an OB appointment. Sam had a blast with auntie Sara, and P and Soph enjoyed their time with Meme and grandpa. My OB appointment didn't go as well as I had hoped that it would. The doctors are getting more and more concerned as am I. My blood pressure was fantastic which is such an answer to prayer. But now I am retaining fluid, and when the doctor reviewed the lab work from the ER, she realized that my liver function tests are already declining :-( She said I am so high risk and have so many issues that I am making them all nervous. And said that I need to call with ANY weird feeling that I have. We are now switching to twice a week visits with the doctor. I don't have any idea how I am going to fit that all in.... So I will go in on Monday, if not sooner. Please be praying that we can keep this little one in for at least six more weeks.

IVIG for Preston

My little guy had IVIG this week. He did so well. They had a new child life specialist there, who did such an excellent job distracting him during the IV placement that he whimpered for less than 10 seconds and that was it!!! It was unbelievable. She was so wonderful with him. The IV was placed on the first attempt, and the med infused without any difficulty. She brought in this cute little hospital and some characters (super hero's) to go in it. It was so cute to see Preston playing with them and putting them "nigh nigh." There was also a little elevator in there that he really enjoyed playing with.

Hockey, GI, blood pressure, and the transplant

Sam had a hockey game this week on Tuesday. He seemed fine prior to us bringing him to the game, but lasted only a few minutes before he was asking the coach to pull him out. When he came out he was saying that his stomach and chest hurt and was almost in tears. I feel so bad for him. I hate that he has such significant pain at times that it stops him from doing the things that he absolutely loves to do. Preston had a blast at the hockey game this week. He was running around all over the place trying to hit the ball with the hockey stick. On Wednesday I took Sophia into Tufts Floating Hospital for Children. Ever since we saw her pediatrician at the beginning of the month for the diarrhea, we haven't had much improvement so she sent us to GI, just to make sure all was ok. The drive into the hospital and the drive home was absolutely horrendous. But Sophia was so awesome. She usually gets nauseous but she did really well both ways. She allowed them to take her blood and she didn't even whimper or cry. She was polite and allowed the doctor to ask her all kinds of questions and responded appropriately. I am so proud of her. The doctor is thinking that things will just get better, but is checking some labs to rule out food allergies and crohn's disease. It will take a few weeks to get those results back. Since Sam's reaction to the IVIG and the high blood pressure because of it, we have been going to our pediatrician just to keep tabs on it. PRaise God yesterday it was fantastic. 90/60!!! I am unsure of if we still need to keep going now that it is back down to normal. It is hard to believe the road with Preston for the C. diff will be complete tomorrow! I am just so amazed how God has worked this situation so perfectly. We will be heading in tomorrow, leaving our house between 04:30 and 5 am. It will be a long day but I am already rejoicing in God's healing power in my baby boy. Prayers are greatly appreciated.

IVIG, Preschool conferences, and a trip to the ER

I am praising God that Preston's IVIG went so fantastically well today! They were able to get the IV in on the first try. He fell asleep shortly after and then slept throughout most of it. He was fairly miserable on the way in to Children's today, but thankfully he seems to be feeling much better. I went to Sophia's preschool conference today. Her teacher was very happy with all the progress that she has made. She feels as though she will do very well in kindergarden and has no concerns with her except for a warning about how much of a perfectionist Sophia is. And that that perfectionism prevents her at times from trying new things in fear of not doing it well. She stated that she has gotten better at being willing to try new things but that she still struggles with not wanting to, because she wants to be really good at everything she does. I shared how I feel as though she doesn't want to disappoint people if she doesn't do something to her liking. All in all a great conference. I can't believe my baby girl will be starting kindergarden in a few months. My poor friend Sara had an anaphylactic reaction to pudding today and ended up in the hospital. I went and sat with her for a little while, just to keep her company. Poor girl! Please be praying for her, her doctors can't seem to get a handle on her allergic reactions and they keep getting worse.

And the craziness continues....

Actually today wasn't at all a crazy day to start with. I actually had just messed up scheduling wise :-( Preston has IVIG tomorrow and I messed up the child care for Sophia and Sam. I had forgotten that Matt was working late tomorrow too. It is so weird how I become (MORE) forgetful and unorganized while pregnant. Preston's IVIG is tomorrow and I am praying and praying and then praying some more that they don't struggle for IV access like last time. Will you please join me? I also called to schedule Sam's next IVIG with Preston. I am not completely sure what the plan for Sam is yet, but I wanted to reserve the spot just for in case they decide to either try the same IG product or something different. I will certainly have my hands full that day.... I had spoken with our pediatrician about Sophia's GI issues that she has been having yesterday. She recommended consulting with a GI, so she called down and tried to get an appointment with the GI doctor that we see for the boys. Unfortunately he is switching offices (we already knew this) and therefore as of right now isn't taking any new patients until the new office. So she called another GI doctor that will be in the same practice that our GI is going to, and they got her in next Wednesday! Praise God for Him quickly getting us to a new doctor. Now I am just praying that there isn't something too crazy going on and that this will be a one time visit for her and we can get her back to normal.

Swing set, sunshine, IVIG and high blood pressure

How's that for a random title? So after Sam's reaction to his IVIG, the first thing I did this morning when I got home from work was to start making phone calls to the various doctors. My first call was to our pediatrician, I left a message with her nurse, and within three minutes she had called me back. She immediately did what I had suggested and was able to pull up all of Sam's blood pressures since a year ago april. So that she could review the trend. His blood pressure has been increasing over the last several months, and she is thinking that it is related to the IVIG. She had me bring him in to her office today to check his blood pressure and make sure the rash had gotten better. His blood pressure was much better than Friday. She actually said that she would have admitted him Friday night if she had been notified of how high his blood pressure was. She also believes the bloody nose was due to the high blood pressure. So at this point the thought is that this is an IVIG reaction, and that there isn't any underlying cardiac issue. Thank GOD!!! When I called allergy and immunology our doctor was unfortunately not in the office today. So I don't have a plan yet moving forward. I am not sure what he will determine. I am wondering if we can trial him off the IVIG since it is summer and see how he does. I am not sure if that is what will happen or not.... Hopefully will hear back from him tomorrow. We were so blessed to inherit a used swingset from my parents. The kids are absolutely loving it, and getting so adventurous with what they do. Lately and even this winter when the kids have gone outside in the yard to play, there is a friendly neighborhood cat that comes to play. She is super friendly and loves the kids. She especially seems drawn to Preston.

Reaction to IVIG

Well it would appear that Sam has had another reaction to an IVIG product. I am not sure what will happen now. There are now three products that he has reacted to. I am not sure how many more there are to try. Last night his cheeks were really splotchy but he had no fever and seemed ok. But today his cheeks as well as the back of neck, throat and multiple other places on his body have become rashy. He has complained of that the rash is burning and stingy as well as very itchy. The immunologist is allowing me to use a prescription hydrocortisone cream on it, but due to the platelet problem I can't give him Benadryl or any other antihistamines. Poor guy! He is doing ok right now, the hydrocortisone has helped quite a bit with the itching. I am so frustrated. I really was feeling good about where he is right now. With all that is going on with Preston, things have been fairly stable with Sam. The GI stuff always seems to be an issue. But yesterday at IVIG he had some elevated blood pressures and then last night he had a horrible bloody nose. I contemplated bringing him to the ER because the bleeding wouldn't stop, but after about 45 minutes praise God it did. So now it looks like maybe all these separate things were maybe a reaction.... We will be speaking with his hematologist and his immunologist on Monday. And prayerfully between now and then he will continue to have lessening symptoms and by Monday he will be back to normal,

IVIG

Sam had his IVIG today. I was hopeful that the mountain dew would have the same affect on his veins as it did last time. His veins definitely plumped up, but not as big as last time. But praise GOD, one stick and the IV was in!!! I am just so thankful! He tolerates it all so well, but this past six months or so a few times he has tensed up and become visibly anxious, even if he doesn't do anything with that anxiety. So it is even more pertinent to get those lines in on the first try. I am just praising God that all went smoothly. We were also blessed today to have his friend Berto come and hang out with him throughout. It was WONDERFUL! God really does put friends in your life for a reason. I just watch him for hours have so much fun today. Berto is several years older but they really connect. I am praising God for friends that get us through the hard stuff. I have thankfully had some wonderful conversations this week as well. I so often get overwhelmed with the thought of my family moving away, but am so blessed to have my Christian family surrounding me, and loving my family and giving us more people to love too. I am so blessed. Sophia still seems to be struggling with whatever this GI thing is. She is slowly getting better, but has still had some discomfort, increased gas and poor eating. The X-ray of her belly essentially came back normal, the stool studies have come back abnormal again. Today when I spoke with our pediatrician she was actually contacting the boys GI doctor to see if he had any recommendations. Gosh I really don't want to start doing all kinds of crazy doctors with Sophia.... Sophia and Preston got to have some one on one time with Daddy this afternoon and evening while Sam and I were at IVIG. They both were worn out from their adventures with Daddy. Preston fell asleep holding his FAVORITE toy of all time, his school bus.

IVIG for Preston

Today was just a plain old horrible day. We all woke up early and the day started wonderfully. We got Sam on the bus and then I quickly went to the library, the doctors office and the bank all before 9am. I then dropped Sophia off at school and deal with a problem with the bank. Namely then essentially "losing" or Savings! I was totally panicked about it. But I had to bring Preston to Children's for IVIG. WE got there and were thrilled to have a different nurse than we normally have. And she was so nice. But unfortunately she couldn't get his IV in, after she tried multiple times, she then had another nurse come and she tried multiple times as well. As a mom, it is just pure torture to hold your child down and allow someone to hurt them :-( It was so horrible. He just had these huge crocodile tears and just kept saying "Mama mama..." It was heartbreaking. They got to a point where they were going to just send us home and have us come back tomorrow to try again. I sent out a text asking for prayers for them to get this one last shot and they did! Praise God!!!! The poor guy was pretty traumatized by the whole scenario but eventually he settle down and was able to play for a bit before the medicine kicked in and he fell asleep completely exhausted... It really made me think today about God's love for me. I mean He knew without a doubt what horrible things would be done to Jesus, when He came to earth. He knew that he would be tortured and prosecuted. He knew that He would be crucified. And yet God chose to allow that to happen, for me! It is such a humbling thought, especially after the day we had today. We serve such an amazingly powerful God, but He is also the most loving gracious God. I can't imagine, I just can't even begin to think about knowing what would happen to Jesus, and choosing to send him still, for me and for you!!!!

IVIG

They both REALLY ENJOYED some popsicles!!!! Sam had his IVIG today. It went ok. For some reason he was very anxious and jumpy today. His veins also were pretty poor. But I am praising God that Carol got it in on the second try. And that all went well. Sam is such a trooper and he was so good to Preston today while he was there. It is certainly becoming much more difficult having Preston with me now that he is a runner. He feels completely comfortable running all over the place and doesn't like to be confined. But all in a all a good day. Sam had some elevated blood pressures today but praying that it is just a fluke. He is starting to gain back some of the weight that he had lost as well. He weighs 46.4lb and is 48inches tall! Getting so big

I don't even know where to begin....

Gosh it has been so long. We have been on a roller coaster ride for last several weeks. Preston still seems to be struggling, but the struggle fluctuates on a day to day basis. He is still having lots of diarrhea, and intermittant severe belly pain. He was started on a second medication last week that is supposed to help get the intestinal infection under control. We are seeing a specialist next week, to discuss the possibility of a fecal transplant. Yes you read that right. They will actually put someone elses stool (Matt's) into Preston's colon to try to grow some good bacteria there to help fight this battle. The concern is that due to the immune deficiency that the bacteria from Matt could make him sicker too. So we aren't really sure what we are doing yet. Our immunologist has been doing some research as well, he actually has mentioned giving IVIG orally into his stomach and trying to see if that would make a difference. Please be praying for wisdom and strength and peace and hope for all involved. WE also have been to a geneticist. This appointment proved to be very emotional and overwhelming for me as I went alone. THey are thinking that there are a couple of possibilities of genetic syndromes for the boys. In doing research I don't believe either of them are correct, but I am no expert. So we will be waiting several weeks for the results of the DNA tests. We got a huge blizzard last week and Matt built a "quincy" for the kids. It is essentially like a snow cave. It is huge. They are hoping to sleep in it this weekend. I am so thankful that the kids have such an outdoorsy dad that allows them to have these cool memories. Preston is not a huge fan of the snow, but he might like it when he isn't feeling so crummy. The rest of us are doing ok. I am operating in what seems a continual state of exhaustion but each day I pray that God gives me the energy to get through the day and every day he meets that need :-)

IVIG for Preston and severe belly pain for Sam

Today was quite the day. Today was the first day back to school for Sam. He got up well this morning and we made it to the bus stop just fine. Then Sophia, Preston and I went to my mom's so Sophia could spend the day with her. Then Preston and I headed into Children's for his IVIG. He was so serious when we arrived. I didn't expect him to remember from only being their one previous time. But I think he did. He would not smile AT ALL initially. He was so very sad when they put the IV in, but they got it on the first try. And they gave him tons of toys to play with so he did have fun. And it all went well. He took a nice little nap and all went fabulously.

We got home just in time for me to make dinner. Sam was a little irritable but was only complaining that he was hungry so I didn't think too much about it. He ate dinner really well and then was in excrutiating pain. He was like writhing in pain on my couch. It was awful to see. He did that before when he had the eosinophilic colitis, and I am prayign to God that it isn't coming back :-( I ended up giving him some papaya enzymes and it seemed to help. The GI doctor on call said it could be a colitis from the description I gave her, but I am praying it was just some fleeting hting

IVIG and Soph is still sick

Today Sam had his IVIG. On the way into the hospital he totally wiped out on black ice in the parking lot, but thankful he is ok. He will probably have quite the nasty bruise on his leg tomorrow from the fall but otherwise he is fine. We had one of our favorite nurses today, although there are so many that we love at Heywood. Nurse Carol is one of our favorites. On Sam's first admission to the hospital after discharge from NICU she was our nurse. She has been our nurse many times through the years, for Sam and now twice for Preston. We are praying that in 2013, the only time there is a need for nurse Carol is for IVIG :-) But in case it isn't we are so blessed to have her. She got the IV in on the second try which is great, I love when it is the first try but that doesn't always happen. Then Sam played a lego game on the website about Pharoahs. I got to do a little reading which I love to do and don't often have much time for. And then I played SuperHero Uno with him. It was so fun :-) Praising God for a good day!!! But also anxious becuase Sophia is still feeling yucky and coughing lots.

Uggghhhh!!!!!

So it would appear that the person who hit us is responsible for replacing our carseats, which is totally awesome. But they have to BE THE EXACT some ones, fabric and all.... Well they don't make the same prints of fabric! They only make the pattern typically for one or two years, before a new print replaces it. So I am in the process of figuring that out. I guess you could say I am a carseat snob. We spend SO MUCH time in the car, driving into and out of Boston Childrens, Mass General etc that I want my kids to have super comfy seats, that also have very high safety ratings. And I just don't have four hundred dollars right this second to go buy new ones. So please be praying that this guys insurance comes through quickly. For now I can use the extras that were in Matt's car, but totally not nearly as comfortable. Preston had his 15month well child check up today. He is 22lb 11oz and is 31.5 inches long!!! He is growing amazingly well. Unfortunately the doctor thinks that he probably has a sinus infection (I do too) but becuase of his C diff history we both are very hesitant to treat with antibiotics at this point. So we are going to try some antihistamines and allergy medicine to hopefully get him better. He also has been puking again the last few days, and I think the reflux is worsening, not sure if it has anythign to do with post nasal drip or not but in any case it is waging a war on my son again :-( GI is having us restart the reglan, but everything else is going to remain the same for now. We shall see.... This is a picture I took of him the other day at my moms...

Sophia had her little Christmas presentation at school today. I am not going to lie it was cute but I was definitely a little sad watching it. With Sam and last year with Sophia we were at a christian preschool, the Christmas program was all about what is really important: Jesus.... But in a secular school it is all about Santa :-( Sophia did a wonderful job but it wasn't what the real Christmas is all about. She was so cute and animated during her program. So fun to watch her little personality. Preston had a blast at her school too.

And then tonight she wouldn't eat her dinner and said she had a fever, and SHE DOES!!! I am so sad about this! I was really praying that this year we would all be healthy and that Christmas would be healthy. Praying that that is the case. Poor girl. Tomorrow I am headed into MGH with Sam for an appointment with a new doctor, this is an ENT, the coordinated care docs are thinking that his adenoids possibly grew back :-(

Here we go again....

Sam had his follow up with the Coordinated Care Clinic at MGH yesterday, and he had IVIG on monday. He weighs 46lbs and is 46inches tall!!! Growing so well now!!! IVIG went phenomenally well. IV in on the first try, no reactions and we just flew threw the infusion. We were so thankful to have Auntie Sara there with us. It was a family affair this time. Daddy was there too!!! Today at Coordinated Care they were asking all kinds of questions and I was just going along answering hte questions, not really thinking about where they were headed. After all the questions they think that there is a possibility that Sam's adenoids have grown back. Now the decision to have the tonsils and adenoids removed two and half years ago, was a terrifying decision. And one that we prayed and prayed about. Becuase of his bleeding disorder this was a BIG DEAL. Praise God all went well, we did have some bleeding but God took great care of him. But now thinking that there is a possibility of the adenoids needing to be removed again, I am so anxious. For now I have to make appointments with pulmonology, an ENT, and schedule a sleep study. Crazy!!! I know God will walk this road with us, but I am still trying to wrap my brain around Preston and IVIG.... We had my in laws over the other day for dinner. It had been my father in laws birthday. My kids absolutely adore him and were climbing all over him essentially the entire time he was here. They were fighting over him at the dinner table. He is a rough and tumble grandpa and the kids love it. They also like snuggling with Grandma :-)

Christmas Traditions

This year I am so grateful and thankful for our family and for the journey God has brought us through this year. But for some reason I am just so overwhelmed with Christmas this year. Matt and the kids decorated the tree while I did some cooking. I just have some feelings of being overwhelmed and some sadness. My Uncle Bruce gave us a beautiful ornament when my grandmother died, two years ago. He said it was like a guardian angel. In the middle of the ornament is a picture of my grandmother. Looking at that ornament brings so much joy and sadness at the same time. Joy for the wonderful amazing Godly woman she was and for the many years I had with her. Sadness for the fact that she didn't even know Preston was coming, and that he never got to be rocked in the rocking chair and sung to by her. I will post the pics of decorating the tree tomorrow. Another one of the traditions we have for Christmas is going to a family friend of my mother's who has several house lots full of Christmas lights, they have been hand making new decoratings every year for 37 years! They have gingerbread houses, trains, elfs workshops etc. It is so fun! I am so very thankful that my children are really grasping God and what Christmas is all about this year. I am so blessed to have children who are so kind and compassionate to others. I am so blessed to have them on loan from God. As we continue the immune deficiency with Preston (and Sam) my prayer is that I can stay focused on Him and be a light for the world through all of the sickness. As I spoke with the IVIG nurses this week so they could get an idea about Preston, I was just overcome with peace, they were so kind and let me ask all my questions.