Friday, September 28, 2012
We are home! Totally exhausted but home. There are lots of things still pending, but he is puking less, and as long as I can keep him hydrated we should do fine. The doctors said that it will take four to six weeks for his stomach to heal but we are believing that God will heal him sooner! Lots of follow ups and I will write the details later but for now: Praise God we are home!!!
Wednesday, September 26, 2012
Today was Preston's scope. It was a fairly rough morning with lots of crying due to him being hungry prior to the procedure. Thankfully they were able to take him a little earlier than expected. I was able to go into the procedure room and stayed with him until he was asleep and then had to leave. It is so awful to see your child limp and lifeless and their eyes roll back in their head. He gave the team quite the scare, after he was given the sedative his throat went into spasms so his oxygen saturations dropped and they had to give him a short acting paralizing medication called succinylcholine to help them break the spasms and be able to get the tube down so they could oxygenate him. He did very well. His esophagus looks great, and his colon looks good. They did do biospies of both of these areas. His stomach looked pretty inflammed and swollen. Unfortunately they won't know what is causing all of the swelling and inflammation until the results of the stomach biopsies come back. But for now I am so very thankful that all went well that he is now resting comfortably and there is FINALLY talk about discharge!:-)
Tuesday, September 25, 2012
God has given this momma such joy today! I am just so very thankful that Mr P is starting really turn the corner and feel better. He is eating and tolerating food better today. I still can't get him to drink any formula but I am hoping that will come tomorrow. They are putting him on a ever more hypoallergenic already broken down formula to see if he can tolerate it, but he hasn't been willing to drink it yet because of the taste. So that is a specific prayer request that he would drink the new formula. Tomorrow is the endoscopy and sigmoidoscopy and I will be honest I am so anxious about it. Yes I know that God will be with him and that all will be ok. But personally holding my child as their eyes roll back in their head and they go completely limp is absolutely horrifying. It is by far the hardest thing that I have had to do as a parent. I am dreading tomorrow specifically for that reason. My mom was supposed to be coming to sit with me during the procedure tomorrow but my uncle had open heart surgery today and is having a tough time, please be keeping him in your prayers as well. The feeding team came in and evauluated him today, they see nothing mechanically that could be causing this problem. So that was wonderful to hear He is certainly feeling much more like himself, he is babbling and playing and letting other people hold him. He is fighting the medical professionals when they try to do anything to him, as opposed to just laying there and not having the energy to fight. God is healing my boy and I am so very thankful!!!!
Monday, September 24, 2012
Today MR P haad his upper GI series done. It went very well and he tolerated it well. He actually really wanted to drink the barium! Silly boy, doesn't want to take anything but my milk and BARIUM!!! So I am praising God tonight that the upper GI showed no blockages! It did show that he is refluxing, and since they are already treating that with two medications it must have been really bad at home, or the meds they are giving arent' working. In any case they are changing them and we are hoping for improvement. As of now we have LOTS of blood work pending. These studies, are looking for a malabsorption syndrome or an immuno-deficiency. Those are the most likely things that could be wrong that they are thinking. There are some other pending studies as well. I am praying that we will have some more thinks that they are thinking are wrong to eliminate off the list tomorrow. He has a worsening rash on his trunk. We aren't sure what it is from.... It might be a part of whatever this illness is, but the infectious disease docs are watching him closely. Today he was more playful and it was so nice to get some smiles out of him. I got a glipse of my guy before he got sick, and oh the joy it brought to my heart is indescribable. I am just so thankful that I have this amazing little boy, and although this has been so hard and so drawn out, it is a reminder again of God;s love, I can't imagine the heart break of God watching Jesus' life unfold, knowing the ending of the story. And yet he loved us so much that He allowed it. I just can't even beging to fathom that great love. As I have sat here with Mr P and seen all he has gone through it has been heartbreaking, exhausting, frustrating etc etc, but I can't imagine letting someone hurt him. What amazing love our Father has for us!!! When P was feeling good this morning we played with blocks, it was so nice to see him playing.
Sunday, September 23, 2012
So today had just been such a rough day. There are so many crazy hard things going on. And unfortunately this morning I let myself get caught up in the unknown and the fear of the unknown, in this situation and in others. I took my focus off of the One who brings peace. I started focusing on the world and all that is going wrong right now. And then God gently reminded me that He is walking this road with me, and that I don't need to fear. God has this ALL UNDER CONTROL. I don't know where that leads us here on earth, but I know where it leads us for eternity. That being said here is the run down of the day: PICU and IV teams unsuccessful with IV starts. So then the plan quickly moved to a special type of NG tube that goes beyond the stomach, and they would be dumping all the nutrients and things he is lacking there. But how awful would that have been for him. I am so thankful to God that He had a nursing instructur here who had a NICU background, and she got special permission to come start his line. He doesn't love it, AT ALL. But it is in and hopefully he will start getting hydrated and his lab values will be better.
Today has been horrendous. Poor P has had several attempts to get IV access, between the PICU doctors, and the IV team, and floor nurses. It has been horrible. The doctors came in this mornign and decided that they wanted to put in a special NG tube that goes past the stomach, and therefore whatever went down it would not be able to be thrown up. They are now looking inot malabsorption syndromes, more specific immune issues, severe allergy issues etc. And due to the reaction he had to yesterdays antbx they are unsure of how to treat the intenstinal infection... So we wait. For now please keep him in your prayers. I will update this evening if I can
Saturday, September 22, 2012
Friday, September 21, 2012
So we transferred down to MassGeneral today. Even though we had been speaking with MGH all week, and they had been saying that they wouldn't do anything different we have been transferred today because he has been sick way too long.... They are htinking there is something more to this than just the intestinal infection. They are talking about ultrasounds and upper GIs, and scopes, and infectious disease docs etc etc. YUCK! He has been fairly miserable since we have gotten here. But is currently finally sleeping. We will be seeing the infectious disease docs in the morning, but for now we are on isolation precautions and aren't allowed to leave the room:-( At our home hospital I had a bed to sleep in but not here:-( Praying that this doesn't screw up my back.
Gosh I was really hoping and praying that I would be home today with Matt and Sam and Sophia with Mr P. I was praying and believing that that would be the case. Even throughout the day yesterday with him vomiting I still was believing that we would be home today. Unfortunatley this morning he has lost weight, he weighs 19lb 2.5oz this morning. But it looks like we are not. Preston has continued to vomit today and now is possibly having a reaction to the antibiotic. Our PCP is calling into Boston again (she has talked to them daily since admission) because she thinks she wants to transfer us there. Please be praying that we don't have to transfer...
Wednesday, September 19, 2012
It is SSSOOO HHHARD being in the hospital, and away from the rest of my family. I am so very thankful for the friends and family that are lifting us up in prayer, and for the trip I got to make home today to shower while my mom stayed with Mr P. I am thankful for the nurse Jan today bringing me in some Reese's. I am thankful that all of our nurses have been my friends. I am thankful that our babysitter has been so flexible and available to get Sammy on the bus this week. I am so thankful for Shannon keeping Sophia and loving on her. I am thankful that the other day when our dryer started sparking that I heard it and we dind't have a fire, but then when we called the repair guy he said it would be several hundred dollars to fix. But praise God all that is wrong is that a screw fell out of Matt's pocket and nothing is actually broken. Mr P threw up several times throughout the day today but I am so thankful that he was able to take a tubby, and that that made him so happy. He weighed 19lb 6oz today
Tuesday, September 18, 2012
The vomiting has continued today for MR P, but he has tolerated nursing very well so at least he is keeping that down. They were able to get the IV in on the third attempt. And I am praising God that it is working well, and so far he has gotten two doses of antibiotics in it. He has had periods of happiness/contentment, and I was just rejoicing in those moments today. And then there were periods where it seemed as though he was in complete agony. Poor guy screamed for more than an hour. I sang every hymn, praise and worship song I could think of during htat time. I am so thankful that I was able to eventually sooth him while singing to him about God's love. It was certainly a rough day, but I am praying for a restful night and discharge tomorrow (I hope)....
Preston had a fairly good night last night. He slept much more comfortably than he has in over a week. Unfortunately his IV blew and they had to restart it this morning, so he got stuck 5 times today:-( Poor little bug. He was also allowed to eat some bananas but he vomited them. So unfortunately due to the vomiting and difficulty with starting the IV, we aren't going to be going home today. :-( Please continue to pray for my little munchkin. He has lost four ounces today too.... As we sit here I can't help but think about how richly God has blessed us. Sometimes life is so busy that we get caught up in the hustle and bustle and don't have the quiet moments to think about how God has carried and blessed us. So in the quietness I have been thinking and I am so so incredibly blessed. Just since this illness... -my friend Stephanie has been making food that is safe and yummy for Sammy. She has taken the extra time to find recipes and ingredients that are good for him -Shannon has taken Sophia and loved on her like I like to do, multiple days, and brought her to and from school -our Aunt Terri, has come over and helped clean, fold laundry, babysit the others, cook, and pack lunches/bags etc. -I got pick me up flowers from my mom, and she came first thing this morning to bring breakfast and let me take a shower -Paula came last night to give me someone to talk to and brought food to eat and Mr P got some snuggles from Auntie Paula so mommy got a break....
Monday, September 17, 2012
So after all day of waiting Preston was admitted to the hospital earlier this evening. The plan is to be here for at least twenty four hours for IV antibiotics and then hopefully transition over to oral antibiotics and be able to go home. I am praising God that they were able to get the IV in on the first try. He has had his first dose of antibiotics and tolerated them well. He is sleeping comfortably for now. He weighed 19lb 9.5oz today We are praying for a restful night sleep, healing for his little body and answers/knowledge/direction for the doctors. Thank you for your prayers:-)
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...
Sunday, September 16, 2012
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!
Saturday, September 15, 2012
This song is speaking to my heart today. I am frazzled but praising God regardless. I talked to our primary this morning, she will be getting us in to immunology and GI ASAP on monday, sooner if needed. I am trying so hard not to compare the two boys... but it is hard not to. Especially if I look at Sophia and how healthy she has been. Today Preston has vomited his antibiotics:-( I am not sure what the doctor will say about that. I am waiting for a call back from him. If I think about this with Sam, Sam was started on the oral antibiotics but didn't tolerate them and vomited them so we ended up in the hospital.... Choosing prayer over worry right now! Rejoicing in God's power over Preston's infection, and knowing that God knows each step of the way.
Friday, September 14, 2012
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.
So after yesterday I was convinced Preston was all better, that God had healed him and that we were past whatever illness was plagueing him. But starting last night and into this morning he has started having the bad diarrhea again. We are off to the doctor shortly as it has now been more than two weeks that this little guy of mine has had diarrhea. That being said I am ok. I know that God has this completely under control. It is kind of strange, the peace that you get knowing that your worry does nothing. That God has the perfect plan, and my fears/anxiety etc won't change His master plan. That He sees more than I can even fathom and that Preston's life is always in his hands. Now I know that this sounds maybe a little crazy to some of you.... Preston is not deathly ill, but with our history and with all we have gone through with Sam, the thoughts keep running through my head that each of these very frequent illnesses that seem to last forever that he keeps getting is a part of something else. And that is overwhelming if I let it be. But I am choosing to trust my God because He is more than able to provide and care for whatever comes our way. So please continue to pray for my little guy, that whateer is going on in his little body will heal, that his poor bottom won't hurt anymore, and that I can continue to have faith and trust that God has this all in His perfect plan. Sometimes I get sucked into feeling overwhelmed and scared and I want to cry too...
Thursday, September 13, 2012
Wednesday, September 12, 2012
I am reading an amazing book right now called "Calm My Anxious Heart" by Linda Dillow. I am learning so much about my faith and trusting God regardless of the circumstances. My wonderful friend Meg had given me this book last week to read. I had started it but with the baby being sick and preparing for his party I hadn't dug much more into it than the first chapter. The devil certainly places anxiety and fear in my heart as a way to prevent me from focusing on God. The devil tries to distract me from keeping my eyes towards the One who is in control. This past nearly two weeks where Preston has been sick has been absolutely exhausting, but beyond that in these last few days I have started getting anxious. Wondering about if there is something very serious wrong with him, or if he has some type of malabsorption issue, or the scariest thing I have thought is what if he has an immune deficiency too like Sam and he just can't get over this by himself.... That is something I have thought multiple times in the past, and then I start comparing him to Sophia, who was NEVER sick, and Sam who was ALWAYS sick, and then there is Preston who is ALWAYS sick. And then that anxiety creeps in and makes me start thinking about the what if's of IVIG and the repercutions of an immune deficiency. But as I am reading this book I am reminded about CHOOSING to keep the focus on God, and remembering that HE is the author of the book of our lives and that HE knows the outcome regardless of what we choose to do in any given situation. He doesn't need our help, He has the perfect plan for our lives. We just need to trust Him and let him lead us and calm us in the trials of our lives. I am just so blessed to be reading this book as I am struggling with my back injury and the "what if's" that come along with that as well as this seemingly endless illness that Preston is fighting. Some verses shared in what I read today: I Timothy 6:15 God...is the blessed controller of all things, the king over all kings and the master over all masters. This is an excerpt from the book Calm my anxious heart, about this verse "Who controls my life? God. What kind of controller is He? Blessed. In the words of a well known theologin J.I. Packer, "Contentment is essentially a matter of accepting from God's hand whatHe sends because we know that He is good and therefore it is good." Psalm 16:5 Lord, you have assigned me my portion and my cup: you have made my lot secure. So tonight as I struggle to rest, with this very sick baby on my hands, and a trip to the doctor in the AM, I am praying for my focus to be on God and on His will for our lives, knowing that His will is perfect for each of us, and that all I need to do is trust in Him.
Tuesday, September 11, 2012
I can still remember the day like it was yesterday. I remember sitting in my college classroom getting ready to take my first nursing exam. I remember needing to call my family and tell them I loved them.... And as the days after progressed I remember feeling so helpless and sad. I remember praying for the survivors, for the victims, for the families. And here 11 years later there are even more families that I remember and pray for, now not only for the victims of 9/11, but our military that have lost their lives fighting to keep us safe, for the first responders who risk their lives, for the police and fire fighters who give without regards for themselves. I honor you today, and I pray for you! May God bless you and may He bless America
Monday, September 10, 2012
WEll poor Mr Preston is still sick. I finally brought him to the doctor today. She has seen lots of the cock sockie virus around lately so apparently my little guy had to catch it. The most common variation is the kind that causes "Hand foot and mouth disease" but what Preston has is a little different. The timeframe for illness is 10-14 days so I am praying that we are coming to the end, please be praying for his hydration comfort and healing. And that our house could get some sleep! Thanks!!! Oh guess what this BIG GUY is 19lb 4oz!!!
Sunday, September 9, 2012
Gosh I just can't keep up these days. This whole back thing has totally slowed me down, but becuase I am moving so slowly I am running behind in EVERYTHING. We have had a crazy busy few days but are doing ok. Sam had IVIG on friday and it went well. The IV went in on the first attempt PRAISE GOD!!! Such an answer to prayer on that one. He tolerated the infusion well, and he was able to watch that new movie that was released "The Lorax." Which my kiddos really enjoyed. They had watched it in the theater when it was first released but hadn't watched it since. So he really enjoyed it. And I was so blessed to have Auntie TeeTee join us for the infusion. Preston has had a really rough last week or so, with loose stools, irritability and poor appetite. So I was so thankful to have auntie TeeTee to help with Preston, and she has always wanted to come and support Sam during his treatment. Auntie TeeTee lives in Oregon, but we have been spoiled having her around the last few months, and have really enjoyed spending lots of time with her.
Thursday, September 6, 2012
So I had my follow up doctors appt this week for work related back injury. The doctor is ordering an MRI, as she thinks I have ANOTHER herniated disc! I am discouraged about this. It stinks as I was really getting to a point where I was feeling like the back injury from previously a few years ago was behind me. And here we are again. So at this point the doctor has extended my time out of wokr anther three weeks. It is nice to be home, but awful to be so uncomfortable. It would be wonderful to have this much time off work to be able to do do something fun. Oh well such is life. Sophia had her first official day of preschool and she was beyond excited. She actually woke Sam up today saying "Today is my first day of preschool. It's going to be so awesome. Sam then told her that big school was just work work work. He totally cracks me up.