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.

Sleep Study and Hematology Update

Sam has had two prior sleep studies. His initial sleep study was just before he turned three, as Matt had found him a few times, gasping and grey when he was sleeping. We were given an apnea monitor at home that went off often. When they did the initial sleep study it was determined that he had severe obstructive sleep apnea, and therefore he would need his tonsils and adenoids out. That initial surgery was in January of 2010. Last year we started noticing that he was getting restless again in his sleep and was requesting four or more pillows. He started coughing a lot while sleeping as well. We were sent to an ENT, who did a procedure (I don't know the name) in which they sprayed this numbing medicine in Sams throat and nose, and the doctor took a small camera up Sam's nose and down his throat. He was looking for anything that could be causing the difficulty at night. Apparently adenoids can grow back. We are praising God because Sam's have not. But unfortunately the doctor believed he saw something else concerning in the back of Sam's throat. The doctor believes that Sam has an "enlarged lingual tonsil". Apparently this isn't a super common problem in young children, and it is quite a big deal to fix them. A lot of times children need to be intubated in the post op period while the swelling goes down. All that to say, we had another sleep study. Sam was such a trooper through it all. They attach somewhere around 40 different sensors to various parts of his body. Many of them being on his face and head. But there were also two belt type monitors on his chest and abdomen, sensors on his legs, and his toe. He did so well! While we were at Children's we also met with our hematologist. She is just phenomenal. I feel so fortunate to have her, and her physician assistant Jennifer on our team. Dr. Grace is wonderful at explaining everything and answering any and all questions that I have. Children's had been working on a very specialized test for the last several years, that they believed would help them better determine what exactly was the problem with Sam's platelets. But unfortunately the test didn't give them any ideas. The only thing that we know for sure is "Sam definitely has a bleeding problem. His platelets absolutely don't function appropriately, but it is so bizarre I have never seen anything like it..." And on and on the conversation went. We unfortunately just don't have any new information than we did before the test. His platelets just don't work right. And because they don't know why or how they aren't appropriately functioning, there isn't really anything they can do that will help. So essentially we just wait for the crisis and then have the action plan. This of course is not at all something I like to hear. I want a preventative plan not a crisis plan! I am so thankful for Dr Grace though. She has written up an action plan for us to bring to an ER or have in the school etc in case of emergency of what needs to happen. She has also written prescriptions for us to have specific meds on hand that will help in case he starts bleeding at home, in order to avoid the hospital if possible.

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.

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 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

Preston's IVIG and a trip to the ER

So last thursday the 6th my mom and I drove into Children's for Preston's first infusion. We had a male nurse who seemed wonderful and had been working through the Children's Hospital infusion centers for more than 26 years. He introduced himself and played with P while he was looking for good IV access, which of course wasn't the greatest. He found one in his left AC and we started the infusion. Preston was playing and happy. He ended up falling asleep after about half an hour or so. When he woke up the nurse checked his arm and realized that the infusion wasn't going into a vein it was just going into his tissue like a subcutaneous injection! The poor baby's arm was so swollen and hard. You could tell it really made the nurse anxious as he quickly left and went and got a doctor to come in and look at it. Thankfully the doctor thought it looked like it would be fine, but just said that for the next twenty-four hours that I needed to keep making sure there was a pulse in his hand, and that it was warm. Praising God that that resolved very easily. The second IV they put in went into his right foot. This area worked well for him although he was mad because it certainly limited his movement. He had a blast playing with my mom during the first half of the infusion, before they realized the IV wasn't in the right place...

We got home around supper time on thursday night. He was in great spirits and seemed thrilled to be home. He ate well and did well throughout the evening. He seemed fairly restless through the night but no fever or vomiting or anything. Friday morning he was irritable and wouldn't eat but was ok until the accident.... He and Sophia were playing in the playroom. He has this little tiny stuffed animal riding pony that he likes to sit on. He fell off it to the side and smashed his face on the train table. He put his top two front teeth through his bottom lip, and one actually came out the front of his lip. It was terrible. There was so much bleeding, I was so impressed with how well Sophia handled the whole incident. I was asking her for help and she was wonderful. It is amazing how the nurse in me just took over and dealt with the situation and didn't panic. I called the doctors office to see if she would see us in her office or if we needed to go to the ER. She said she wasn't really comfortable with it if he had damaged his teeth, and therefore recommended going to the ER. We waited in the waiting room for about 20 minutes or so before they brought us back. The doctors were really nice, but were kind of indecisive with what they should do, whether they should glue or stitch. After what seemed like FOREVER they decided to not do anything because it had stopped bleeding. They prescribed antibiotics because of the PID and sent us on our way. Shortly after we got home his mouth started bleeding again, but thankfully popsicles stopped it. Poor little guy had such a rough week! WE have to follow up with the doctor on monday to make sure all is healing well. It looks to be so far...

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...

eat. sleep. worship.

Well we've got the eating and worshipping part down:-) Preston (MR P) had a pretty rough night, waiting to hear what the plan for the day is but for now we are focusing on God and His power over our lives. Our primary will be contacting Boston Children's today to develop a plan in moving forward. Unfortunately this little guy is not tolerating his antibiotics still. This shirt has always been such a favorite of mine for the kids. It is a little big for him, but it is so perfect!!! Please continue to pray for us, today should hopefully lead to some sort of plan...

Claiming God's Promises

I always find it so amazing when I go to church or listen to a speaker, read a book, listen to a song etc and I feel like God planned it just for me. I can be surrounded by hundreds and God speaks right to me! Today our pastor preached about blind Bartamaus, and his request to Jesus. And how Jesus asked him how he could be helped.... even though Jesus could clearly see that he was blind. God wants us to come to Him claiming that He will answer our prayers according to His will. He doesnt say when or how He will answer, but that He will. I don't know how He will answer my prayers for Preston. But I KNOW that He will. He will! Today he had a good day, unfortunately he has been vomiting his antibiotic. Yesterday when I spoke with the doctor he said he would put him in the hospital if he didn't tolerate the antibiotic. But today I actually called our primary and she doesn't feel that that is necessary as long as I can keep him hydrated at home. Thankfully ten years as a pedi nurse has taught me all kinds of ways to keep him hydrated even while stooling/vomiting. He has perked up a little and has had periods where he is playful. He has also slept much more than normal. Tomorrow will be a big day for us as far as information goes I think. Our PCP will be contacting immunology and GI. She thinks that we are heading towards the IVIG route, but I am not sure yet.... I am just believing that God is going to use whereever this takes us to His glory:-) Look at this smile!

Ephesians 3:20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

Trying not to panic....

So we just heard back from the doctor a few minutes ago, Preston has the same intestinal infection that Sam did as an infant. The same infection that we couldn't get rid of, that we ended up hospitalized for multiple times, the same infection that led the doctors into thinking that there was something up with Sam's immune system. The on call doctor wanted to hospitalize us and send us into Boston Children's. But thankfully he called our primary and she said that we don't have to go that route right now. That Preston "looks" good, and his hydration is good, praise God that my breast milk has kept him hydrated this well. I really do know that God has got this all under control and that Preston will be ok. I know that God's plan is perfect, and that He sees beyond this bump in our road. I am also trying to remind myself that this could just be a nasty stomach infection, and nothing else..... That just because it "seems" the same as Sam, that it doesn't mean that it is. Again I quote from "Calm my anxious heart" by Linda Dillow: [ In Philipians 4:7 we see God's part in the contentment process. "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." The Living Bible suggests the the word and at the beginning of the verse means "if you do this." Do what? If we make the choice to pray instead of worry, we will be personally experience God's peace. What a promise! In a world of chaos, problems, heartache, and anxiety, all of us need peace.] I am making the choice tonight to bend my knees and pray for my baby. Please join me in prayer for wisdom for his doctors, and for us his parents to care for him the way God wants us to and for us to have wisdom in decision making, and most certainly for Preston, for rapid healing, for no pain in his belly, for God's will in his life.

Pony Rides and ANOTHER new doctor....

So I am surrounded by some of the most amazing wonderful women. My kids are so spoiled by so many people. They are loved by so many and I am so thankful. One of my wonderful friends, Judy, has a pony and two horses. She invited us over to play and the kids just had a wonderful time. Judy's daughter Audrey was in Sophia's nursery school class. And the girls got a long wonderfully. Also in Sophia's class is her friend Alison, whose older brother Sam was in my Sam's class last year. So the boys had a wondeful time playing too. First the kids got to ride the pony, Pearl. They each really enjoyed Pearl as she was so gentle...

Sam riding Pearl

Sophia riding Pearl

Alison and Sophia

Sophia, Audrey, and Alison

Sam riding Tess

Sophia riding Tess Then today Sam had an early appointment at Children's. Back in May when Sam had his follow up with his immunologist, Dr Baxi expressed some concerns he had with some of Sam's skin tone, as well as some marking on his skin, and he requested that we be seen by a dermatologist. So we had that appointment today. Dr Gellis was very nice. But there were several comments that were made that made me pretty sad. He started off the conversation by saying "Wow your son has quite the extensive medical history, I've not seen anything like it." Which just reminds me what a struggle poor Sam has had. He then went on to inspect Sam skin, which does have some abnormal markings, and he also apparently has a very large amount of moles, in very unusual areas. The doctor kept saying how "unusual" and "concerning" these markings were. He then went on to ask very explicitely about skin cancer in both my and Matt's side of the family. He said to keep a very close eye on his skin, and to call if there are any concerns or changes in his skin.