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,

Children's Discovery Musem

Last fall when we were in the process of determining if Preston had the immunodeficiency that Sam had we were told to not take him out where there were large crowds, and to keep him home when possible. I was feeling really bad about it, we had just spent a good chunk of time in the hospital, and had postponed his first birthday multiple times, so I was really struggling. And then Sam came home from school with some paperwork in his backpack about this program that is funded through a grant. It has been mistaken as Early Intervention but it is not. This program essentially is supposed to be an early literacy program. I signed Preston up, knowing that he wouldn't really be seeing much of the outside world and wanted him to be exposed to people other than us. It has been such a tremendous blessing. Our visitor is just the most wonderful, kind, compassionate person. I am so thankful for her. And Preston just adores her. She comes twice a week, and brings some type of educational thing for him, it alternates between a book and a toy. It has been so wonderful to see him interacting with someone outside of our family in such a positive way. Since we have started the IVIG, we haven't been nearly as isolated. I have taken him to one of the small playgroups that the grant funds as well. There are three other children there. Preston is the youngest and doesn't do much interacting with the other little boys but again it is getting him out and doing normal, non-hospital type things. This week the program funded a wonderful field trip for the kids to the Acton Children's Discovery Museum. Preston had a wonderful time. There was a train room, which it was no surprise he absolutely enjoyed. He also really enjoyed the water table, which was filled with warm water, of course he and everyone that was anywhere near him was fairly soaked when he was done playing. But he had a blast. The other area he really seemed to adore was the little diner. He sat on the stools up at the table, he served his home visitor Martha, he pretended to eat and pour coffee. It was so cute. There was also a ship themed room, in which he wore a little pirate captains vest. It was so cute! And then there were several other rooms that we didn't spend as much time in, a jungle room, a ball room, and a rainbow room. They were all so fun. It was so great to do something with just him and I, that wasn't medical related :-)

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 :-)

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.

IVIG it is for Preston

Found out today that Preston will be needing IVIG. I knew that we were probably headed down this road but it is now official. I am overwhelmed and wishing that this wasn't the case but unfortunately that isn't the case. I will be scheduling the first infusion on wednesday....

Immunology update..... and world prematurity day

So we have gotten multiple things back for Preston's testing. Although I have expected it since he got meningitis, it is still a little overwhelming to actually hear it officially that I have another child that has some level of immunodeficiency. At this point we know that IgG levels are low, we don't have the other immunoglobulin levels back yet, however last month the IgA and IgM were low as well. He also has not mounted a decent response to some of his vaccines which is certainly scary to me. We are also awaiting his T cell and B cell counts. His immunologist already had me do the consent for IVIG, and since we have already been down this road before I know what we are in for. But at this stage of the game I am feeling overwhelmed. I absolutely know without a doubt that God is completely in control of this situation, and He is the author of this book, He knows each and every chapter and page, He has the perfect ending planned. Who I am to question it? So today I am just trying to focus on the knowledge that God's plan is absolutely perfect and that He has got this in His hands. Today is also World Prematurity day. This is something near and dear to my heart. I longed for full term healthy babies that came home with me on the day of my discharge, I unfortunately was not allowed that. But I was allowed to witness God's most innocent creation thrive and grow. As a nurse I have taken care of micropreemies, and delivered preemies, and as a mom I have taken care of my three little preemies. There are so many misconceptions and thoughts about what causes prematurity. There are people out there that think that the mom didn't care for herself well enough, or that she was doing things wrong. But in all actuality perfectly healthy people have complication filled pregnancies and we don't know why. I am a healthy person, but cannot carry a pregnancy to term. With each of my pregnancies I started contracting around 26 weeks, but praise God He kept my precious miracles in for longer. Tonight I ask you to pray for all preemies and for their families, caretakes, and anyone who has any contact with them, around the world for their health, and for organizations like the March of Dimes to continue to strive towards ending this terrible heartache of babies born too soon. For now I leave you with a picture of each of my tiny little miracles, Sam, then Sophia and then Preston. And then I will end with a picture of Sam at the age of 13.5 months when we first started IVIG. Preston will likely be about fifteen months when we start him I think....

And here is Sam's first adventure with IVIG. Wow he was such a ham!!! :-) I am praying that Preston will also be able to easily tolerate the IV attempts, the side affects, the being unable to get around much because of the IV, etc. I am praying for our nurses and staff. God's got this! We will set up the official start day the monday after thanksgiving.

Immunology update and Oreos

So last friday I took Preston back into Children's to follow up with the immunologist. I am so thankful to have this specific doctor on our team. I certainly wish that we weren't seeing him for ANOTHER one of my children, but I am praising God that we have the ability to see someone so knowledgeable about immunodeficiency in kids. Oh my gosh he is growing so well! He weighed 21lb 11oz and was 30.5 inches long!!! This past year has certainly been a faith building journey for me as I have seen my baby struggle so much. In so many instances throughout this last year, God has answered so many prayers, that I never even asked Him to. I can go on and on about how He has blessed us this year, but for today I am just praising God that Preston is here, he is happy and he is growing well. I obviously pray for his health and wish that he didn't get so ill so fast. But that is not God's plan, and I just have to keep saying His plan not mine! They drew lots of lab work, they are drawing labs to determine if his body made any response to all the vaccines that he has gotten as an infant, as he hadn't made any last month. They drew labs to see if his immunoglobulin levels had risen to normal levels, and then they also checked to see if his T cells and B cells had gotten to a normal level. We have lots we are praying about and waiting for answers about. We went over the IVIG and Preston and I went and toured the infusion center. It was nice and the nurses/staff were wonderful. I am still hoping we don't have to go that route but it was good to lay my eyes on it. So as a reward for my little guy I let him have an oreo! And boy did he love it....

Immunology Update...

So I just can't get out of my own way these days. I just keep thinking back to when Sam was diagnosed with his immunodeficiency and how scary that was for us. And when I was thinking about it for Preston, my thought was that if it was the same, we could handle it and it wouldn't be a big deal.... Fast forward to now.... We saw Sam's immunologist this week. And although Preston has low T cells, B cells, and no response to some of the vaccines he has been given, it sounds like treatment will be similar to Sam. Although they each have different levels that are off, IVIG is treatment for both. It will stink to have to be driving back into Boston all the time again, and it will stink to spend whole days doing the IVIG for P and then another day for Sam, but at least this is familiar territory... Sam was fourteen months when we started down this road....

Looking back at these pics reminds me of how long ago we started this journey with Sam. But also how much the Lord has blessed us with so many wonderful friends, family, nurses, doctors and other staff throughout each stage of the process. We don't have a definite plan with Preston yet. They revaccinated him today and will recheck all his blood work in a month. If he continues to show no response, and if he continues to get sick in the next month, then we will probably be looking at IVIG, beginning in late november or so. We saw DR Baxi at Children's and he is amazing. He said that he believes we are headed down the same road as Sammy as far as the need for IVIG, but that he wanted to very clearly know that prior to starting. So vaccinated today and will redraw all labs in a month, and I am to keep track of his illnesses very closely between now and then. Sam and Soph put him in Sophia's baby crib the other day...