Saturday, June 29, 2013

A trip to the ER...

So I had to make a trip into the ER today. I initially contacted my primary care doctor and told her how I was feeling. She told me that I needed to contact my OB. When I called my OB she told me that I needed to go to the ER. SO I got the kids packed up and dropped off at the babysitter and then drove to the ER. When I got there they immediately took me right in, even though there was a waiting room full of people. I was so thankful. When they initially put me on the monitor my blood pressure was elevated, and my heart rate was very high. They did all the labs to make sure I wasn't developing pre-eclampsia and HELLP syndrome again. Praise God, as of right now I am not. My heart however is not liking being pregnant. It is working very hard, and too fast. They gave me some meds to decrease the heart rate, and I will be seeing a cardiologist on Tuesday. Uggh I am trying to not be discouraged but it is so hard. It has always been around 27 or 28 weeks that things start going wrong. As I will be 28 weeks tomorrow I am feeling so overwhelmed. I know that God is in control and that the outcome will be okay regardless, but I just wish it didn't have to be high risk and scary. :-( Please be praying that my heart can sustain this pregnancy for at least another 8weeks, and that no other issues develop. And please continue to pray that this little sweetie grows healthy and strong :-)

Thursday, June 27, 2013

Preston's post transplant follow up...

We followed up with Dr Russell this week. He was happy with how healthy Preston looked. He kept commenting how cute he was and said he wanted to take him home with him. It is amazing how much his personality has changed since he is feeling better. He was talkative and so cute with the doctor. Dr Russell was not happy with the way Preston's stool looked but we are hopeful that it is just taking him a while to start stooling like a healthy person. We are going to do a few different things in the next two weeks with him and then touch base with the doctor in two weeks.

Tuesday, June 25, 2013

GI for Sam and Sophia

Sam and Sophia had a GI appointments at Tufts this week. This was Sam's first appointment back with Dr Zella since he had left MGH. We are so very thankful to have Dr. Zella on our team. He listens so wholeheartedly to Sam, and seems to fight so hard to make him feel well. In discussing how Sam's belly has been recently with Dr. Zella, Dr. Zella was unhappy with Sam's continued discomfort and is really racking his brain trying to figure out how to help him. It is SUCH A TREMENDOUS BLESSING to have someone who wants Sam to feel as well as I do as a part of his medical team. We are going to switch around some medications and see how that helps him. Prayerfully we will get to a place where the belly pain is not a daily occurance. We also saw Sophia's physician assistant Jean. Jean also is very nice. I unfortunately disagree with her about what is going on with Sophia which has been a bit of a challenge for me. I am so used to having medical staff listen to me and really try to grasp what I am trying to get across. And I feel that she really isn't doing that. I have done what she has recommended and don't feel like it has helped Sophia get better. As the time has gone on with whatever this GI thing is with her I have started to really think that maybe this is just some really nasty bug that she has struggled to get over. I feel like we are making slow progress, and that for the most part she is returning to normal. Where Tufts is located is definitely challenging to drive to in Boston. I drove there the first time with Sophia and it was a rough drive. So this time I decided to take the train. The kids were so excited about it. We have heard of some strange things happening on the T but have never experienced anything out of the ordinary until this time. Some guy on the train started trying to take pictures of Sophia! Even when I asked him not to and had Sophia turn so her back was to him he didn't want to back down. Thankfully someone else also told him to back off.... So awkward!!!

Saturday, June 22, 2013

Really hard week...

It has been a rough week for the hospital where I work as well as for myself. On Tuesday we had an emergency meeting with the CNO of the hospital. She told us that they are closing one of the units that I work on, I am completely heartbroken over this and not really sure what God has for me next... I was eight years old when I knew that I wanted to be a pediatric nurse. And that desire has never left. I love my job so much and have been there for almost 11 years. To hear that this unit that I love so much is closing is devastating to me. Beyond it being my job, these are my friends, ladies who I have been with through lots of sickness and scary stuff with pregnancies and the kids. I can go back to a regular position in the maternity/labor and deliver ward, and that is probably what I will do, but I am still sad as it isn't my hearts desire. I am so very fortunate to have a job in this terrible economy and I know it. I have just been so blessed to have such a fantastic work environment for so long, that I just don't want to give it up. I would love to look elsewhere for a job, but with the way Obamacare is affecting hospital reimbursements I don't think that our hospital is going to be the only one forced to make devastating cuts to services. There are 22 of us that are getting displaced. We all have lots of seniority and therefore we can essentially bump someone with less seniority in another place in the hospital. But that is horrible too. I am just so sad about all of it. On top of the lay offs and units that we found out are closing on Tuesday, on Thursday a colleague unexpectedly and tragically passed away. This nurse has been a part of the hospital family for somewhere around 20 years and was a phenomenal nurse. She worked a lot in the ER and the poor ER staff fought desperately to save her life and were unable to do so. It was a horrible loss. Rough week!!!! I will post more tomorrow..... please be praying for those affected by the lay offs as well as the death of our co-worker

Tuesday, June 18, 2013

The Sound of Music

I was so thrilled to spend a special afternoon with Sophia and my mom recently. Last weekend we went to see the musical "The Sound of Music." Sophia was so excited to have a "mommy day" where we got all dressed fancy. She was so cute. My mom joined us as well, and she asked me to ask my mom if she would dress fancy! We had such a wonderful time! The musical was absolutely phenomenal. I would love to see it again. Sophia just loved the children and the singing. The youngest Von Trapp child in the musical was only five years old! She did so wonderfully. It was a beautiful day. I am so thankful that I got to spend this time with my mom and Sophia making such a wonderful memory.

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.

Friday, June 14, 2013

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.

Thursday, June 13, 2013

My Little Gymnast

Since the age of about two and a half, Sophia has had the diagnosis of joint hypermobility and they have done a fairly extensive workup to rule out some kind of skeletal deformity, juvenile rheumatoid arthritis and several other problems. She started crying when going down the stairs a couple years ago, completely out of the blue, and no one could figure out why. We did several rounds of PT, and all kinds of strengthening/stretching exercises to help stabilize her joints and muscles. After her last spinal MRI we were told that we should get her into something that could strengthen her muscles. I was absolutely heartbroken last year when we were told that our Christian preschool was closing after 28 years. I so desperately wanted all three (at the time 3) of my children to go there. I started researching all the local schools and found one that included some gymnastics classes within the tuition. The school is fairly expensive, but Sophia has thrived there and done exceptionally well. We have heard from this preschool teacher as well how kind and compassionate she is and how she can organize the whole class and get everyone involved in an activity so that no one feels left out. It has been a good fit for her. That being said, physically she is THRIVING! At the beginning of the year she struggled so much with many aspects of her gymnastics classes, whether it was fear of getting hurt, fear of not doing it as well as her friends, or physical inability. The teacher voiced some concerns about her strength initially, but throughout the year she has pulled me aside multiple times to explain how much progress she has made. And now at the end of the year, she has gone above and beyond all of her classmates in her capabilities. The teachers believe that she has a serious talent, and whats more she is thrilled and loving it! I unfortunately am not there during her classes typically, but the most recent one I was able to watch. She is amazing!!! I am just so thankful that God opened this door for her to go to this school and that she is doing so well. She seems to be so much stronger and almost never complains about the discomfort in her joints anymore!!! Praise God! The pictures don't do her justice, but it is hard to get these action shots, and chase a toddler at the same time :-)

Tuesday, June 11, 2013

Puppies and birthday party

Sophia was invited to a birthday party this past weekend at her friend Logan's house. So Sophia Preston and I went to this party while daddy and Sammy had some one on one time together. The party was a blast for Sophia and Preston. Sophia was completely enamored by the TEN three week old puppies that were there. She was constantly wanting to cuddle and play with them. Preston also got a kick out of the puppies. He would squeal and laugh when they walked. I certainly can see an animal lover in her. I would love to have a puppy at some point soon, but with the new baby and the boys medical stuff, I don't think right now is the appropriate time. They also had a jumpy house at the party. This made me very nervous allowing Preston to go in there. But considering Sophia was the oldest kiddo in there, I allowed him in. He had such a blast in there. He was jumping and running. Laughing almost constantly. Sophia also loves any opportunity to jump and tumble so this was right up her alley. Sophia and Logan Preston had a little friend that he was playing with as well. Abby turned two in April I believe. She speaks very well and seems much older than two. In fact they were playing together in a little house structure and Abby told Preston to "get out!" and he actually did! I know I shouldn't have laughed but it was so funny. But when they were with the puppies he kept making these flirty little faces with her

Monday, June 10, 2013

P is still struggling and Abby and Bre come to visit

Preston continues to have a really tough time. His appetite is horrible and he is extremely irritable. Poor guy had a horrible night last night. He was completely inconsolable for quite a while in the middle of the night. Daddy prayed over him and we sang Jesus loves me over and over again until we got him calmed down. I brought him in to our pediatrician today and she is very concerned about how much weight he has lost. Unfortunately the doctor that did the transplant is out of the country and unreachable at this time. The on call for him has ordered a bunch of tests. So I will get that done in the morning. They are testing to see if the intestinal infection is back. I am just so overwhelmed with all of this. I feel like he is doing worse than he was before he had the transplant. I keep telling myself that it is just a hard recovery period for him but I am starting to wonder.... I heard a wonderful song today, that has just kept me focused on God and His goodness. The song is by Hillsong and it is called "Healer". One line of the song says " I know your my healer, I believe your more than enough for me..." Claiming God's healing for my little guy!!! The man who is singing this song in the video is actually battling cancer... Auntie Chantal, Abby and Bre came over to play the other day. I just love these three so much! I so wish that we could see each other more often and that our schedules/location weren't so difficult to work with. Preston and Abby had so much fun together, and Bre and Preston kind of butted heads a little bit :-)

Saturday, June 8, 2013

Sophia's Preschool Graduation

I still can't believe my little lady has graduated preschool! And what is crazier is that when Sam graduated preschool I was pregnant in the pics, and now that Sophia is graduating I am pregnant again. The graduation was so sweet! Sophia was so excited. She is such a little ham for pictures most of the time. Preston really wanted to graduate from preschool too. He kept running up to the kids and tried to climb on Sophia's lap. They sang lots of songs and did motions to many of the songs. It was so cute! She was thrilled to get on a frilly dress even though it was terribly rainy outside when we were getting ready to leave the house They started the graduation singing a song to the toon of "The ants go marching one by one hurrah hurrah..." So the students walked in according to the number in the song. But it was to the tune of the students.... So cute AQDw/tudc89Efpns/s320/003.JPG" /> Once the kids came in they came and sat in their seats which were labeled with their names. There were 22 kids that graduated with Sophia. Throughout the entire ceremony the kids sung several songs. One of them had a part where they had to tickle each other, it was so cute to watch them. It was so cute when she got her cap put on and the tassel switched over and walked across to get her diploma After the kids had received their diplomas they started to get a little antsy, Preston included... We were so happy that Grandma, Meme' and Grandpa all got to come and enjoy the graduation with us. Sophia with her teachers.... Our family, unfortunately without Sam. The graduation was early in the day, and Sam misses so much school with sickness and doctors appointments that I just couldn't pull him out :-(...