Right when I was writing this morning Garrett woke up and then threw up. I debated for an hour before I texted john. He was really fussy last night but hasn't had anymore symptoms today. They are doing a transfusion now and I think we may still get to go!
Saturday Maggie and I went to get dinner and john took Garrett to the garden. He sat him on s chair and when he went to pick him up somehow his drain tube caught and pulled out the stitch and an inch or do of tubing. By the time the doctor came to look at it the drain was all the way out. I do think Heavenly Father works in mysterious ways. We were freaking out, john claims he wasn't but he was. So far his body has handled the drainage really well. We do know there is still some discharge, he acts irritated quite often. He is still pretty pale and doesn't have much stamina but everyday is s little better than the one before. They have weaned him off of his tpn over the last few days and we are waiting for his last antibiotic treatment for the mrsa now.
The doctors are putting him on an antibiotic that they use on aids patients for his immune system. His levels are all about as rock bottom as they can get. He will take that until everything is more up to par. I think we will be working with an immunologist at primary childrens for the next while when we go home to Utah. They don't have a pediatric immunologist in the state of Oklahoma, just one more reason to move Johnny:)
Maggie is so excited we are going to be together as a family. I wish I could have recorded her when I told her we were all going to the motel together. If you could define glee that was her pure emotion! She asked if Garrett was all better and we could go home to our Oklahoma house.
Last night we went out to the garden. There was three little boys all under two, all had the familiar brown bag they use to hang the tpn under on the iv pump. They all had pic lines and all looked sick. It was almost surreal that just last week we were in the same spot, the same what ifs and wondering what ifs. My heart aches for them. How glad and thankful I am for modern medicine, for doctors that stretch the limits, yet how much you hurt for the little souls who are so sick. Hospitals are not a place where babies should spend their growing days.
Thank you to everyone for all the prayers. I told someone that even though I have told people I pray for them you never really realize how much it means until you are on the receiving end. I have felt your love and the sweet spirit of a Heavenly Father that I KNOW is mindful of me and my little family.
Wednesday, August 26, 2015
Discharge!!!!!!!
Well today is a day that we have wondered would really ever come!! The last week has been a roller coaster but the lows haven't been nearly as low and we have had many more highs. Garrett spiked a fever 9 days ago. He had had a really good night and was as happy as could be when he went to sleep. He'd ate a full thing of Cheerios and drank his fat free milk like a champ. At about 1:30 I could tell he was getting a fever. All of the night nurses have complained they can't get a temp on him in the night because he sleeps with his arm out away from his body and the thermometer won't register. I called the nurse and she said his temp was low enough she wasn't worried. As a mom when you lay by your child 20 out of 24 hours you know when something is amiss. He was too hot and too uncomfortable. I called her again a half an hour later and she retook his temp under the same arm. It was 101.5 so she brought in some Tylenol. He was livid by this time. Trying to get a toddler that is mad to take medicine in the little of the night is like trying to part the Red Sea. We got it down him but I could tell after about five min everything was coming back up. He threw up everywhere. They came in and changed the sheets. He has had a lot of anxiety when the nurses are in the room and by this point was a pretty sad little guy. The doctors ordered tests and labs and started him on antibiotics. About this time they started to worry about how anemic he was. We have been giving iron supplements for about a week now. The nurses are also having a hard time getting his pic line to draw blood. They had been taking it out of his tpn line. If they didn't flush well enough his numbers came back scewed and they would have to redraw with another waste and another draw. I'm sure they thought I was crazy, by now I'm pretty aware of certain things. I would tell them they needed to flush extra and they would just smile and do the regular flush. An hour sir so later they would come back in with scewed results. One day they pulled his blood three times. His little body couldn't keep up. Thursday night they woke me up at 3:30 or so to sign papers to give a blood transfusion. He was too anemic they felt to wait. We also did an ivig transfusion in Friday and will do another today. The fluid they pulled off of his belly came back positive for mrsa. This was my low day. I knew how mean it could be. John really felt like the antibiotics were working so we kept our chin up. By this point his drain had also went way down, like to 100 or less ml a day. His tummy was also looking good. It's pretty hard to get to excited because you start anticipating another set back and preparing for it emotionally. But they kept flushing his drain and it was flushing awesome, one day they pulled off about 260 but a few days later they couldn't pull anything.
Friday night john felt confident enough to stay with Garrett so I went to the motel with Maggie, to say she was happy was an understatement. She is like a little goat. She jumps and runs like a little goat. She has to run up every set of steps and see how fast she can come down every wheel chair access. She is our happy thoughts during all of this and truly out little sunshine. We take her baby buggy with us everywhere. If Garrett is lucky she lets him push it:)
Friday night john felt confident enough to stay with Garrett so I went to the motel with Maggie, to say she was happy was an understatement. She is like a little goat. She jumps and runs like a little goat. She has to run up every set of steps and see how fast she can come down every wheel chair access. She is our happy thoughts during all of this and truly out little sunshine. We take her baby buggy with us everywhere. If Garrett is lucky she lets him push it:)
Thursday, August 13, 2015
Praying:)
Tomorrow is a big day and we are praying for a miracle to a Heavenly Father that can work out things bigger than what we can handle, bigger than what we can imagine. We are praying that somehow we will have a miracle. I have came to the realization that heavenly fathers miracles in this life are worked out by people with skills and talents, those who have refused to settle and have continued to push themselves to excel. Talent, knowledge, skill, the unknown and faith all work out a miracle. One of our nurses came to say goodbye. Even here you know there are prayers being asked for our little family and for Garrett. What a comfort this has been. I don't know why it has never dawned on me before but last night I prayed for the other families here, the other little souls who don't know really what's going on or why. There are so many little ones that have sad little stories and their families are searching for the same answers and the same miracles. I pray they can find them. The hardest thing to add to my prayers is thy will be done. Yet with that I also have faith in a bigger plan than all of this. I know that Heavenly Father is aware of Garrett and if my family and one way or another it will work out.
Today was a happy, good day with lots of smiles from both Maggie and Garrett. It has been such a blessing to have Michelle here. Going to miss her strength and presence more than I can stand. She has always been a rock for me to lean on and the older I get the more I realize how dependent I am on her and how grateful I am that Heavenly Father gave her to me for a sister.
Garret's drain has been causing a huge amount of pain. We are realizing it was his main source of discomfort. It plugged yesterday morning so they took it out last night. His little tummy is quite distended and I know it is uncomfortable but he is just glad to have it out. He has been so much happier and active today. His center of gravity is scewed with the extra weight and he is terribly wobbly and weak but he was our happy soul today. They have a park here with big old trees, flowers, squirrels, robins, and sparrows. It is the happiest spot here and we spent a lot of time out there today, the sunshine, green grass, and blue skies is more of a comfort and healing power than anything I can describe. You need out of the four walls of a hospital.
Tomorrow they will replace the drain, do another lyphiocardiogram, and hopefully find area that they can do what is called schlera therapy to and shut off the source of the leak. This is plan b, Dr Lillis that is doing the procedure is very smart, confident and kind. I appreciate those talents more everyday. He is the first case in tomorrow morning. John took Maggie and Michelle to the hotel and is coming back here to sleep tonight.
Praying for tomorrow!!!
Jeannie
Today was a happy, good day with lots of smiles from both Maggie and Garrett. It has been such a blessing to have Michelle here. Going to miss her strength and presence more than I can stand. She has always been a rock for me to lean on and the older I get the more I realize how dependent I am on her and how grateful I am that Heavenly Father gave her to me for a sister.
Garret's drain has been causing a huge amount of pain. We are realizing it was his main source of discomfort. It plugged yesterday morning so they took it out last night. His little tummy is quite distended and I know it is uncomfortable but he is just glad to have it out. He has been so much happier and active today. His center of gravity is scewed with the extra weight and he is terribly wobbly and weak but he was our happy soul today. They have a park here with big old trees, flowers, squirrels, robins, and sparrows. It is the happiest spot here and we spent a lot of time out there today, the sunshine, green grass, and blue skies is more of a comfort and healing power than anything I can describe. You need out of the four walls of a hospital.
Tomorrow they will replace the drain, do another lyphiocardiogram, and hopefully find area that they can do what is called schlera therapy to and shut off the source of the leak. This is plan b, Dr Lillis that is doing the procedure is very smart, confident and kind. I appreciate those talents more everyday. He is the first case in tomorrow morning. John took Maggie and Michelle to the hotel and is coming back here to sleep tonight.
Praying for tomorrow!!!
Jeannie
Wednesday, August 12, 2015
We have had a few up and down days, both emotionally and physically. Sometimes I find myself avoiding to just sit down and go through the emotions:) when we get sleep we are all happier, last night was a good night so hopefully a good day will follow.
Saturday and Sunday Garrett wouldn't let us pick him up. He would say bed every time you moved him and had a low grade fever, we couldn't seem to stay on top of the pain. Monday was a complete opposite, he wanted to go on his "walk" and then played awesome. Monday was my low day. With everything we have read most of the lymphatic leaks we have found are a sit it out and wait. They had finally put him on a bland low fat diet which does wonders for his spirit. His drain atomatically started to go cloudy. About 3/4 of the day they put him back to clear liquids. As a parent you just want to kiss it all better and solve the world. Dr Fishman told us there are to 100% answers to this. There just isn't enough cases to know what works. We have been in Boston for two weeks now and many days it feels like we are regressing. His output is higher than it was pre surgery which gets discouraging.
The night before last he had no output. We have loved our nurses, and our night nurse was ecstatic. About 7:30 I changed Garret's diaper. It was saturated as where our bed linens. His drain was plugged. He was in a lot of pain most of yesterday. About 4:30 they came and flushed it. He had only had about 70 ml output all day compared to 1300 the day before. After the flush the pulled about 600 ml off in a two hour time period. They had also pulled all his Iv pain meds the night before last. They say the oral works a lot better and last longer, trying to talk your two year old into that theory at 1:00 in the morning is a little stressful:) he spits it back in your face and is determined not to take it. When he woke up for the morning we couldn't keep up with the pain. After he took the medicine we'd fill up the srynge and let him squirt it at john. He was pretty good when he was awake.
They did another ultrasound ( we had one on Monday also) there was to much fluid yesterday to tell much. He has a small cyst they are hoping to inject with a scarring agent to see if that will slow down the flow.
His drain is plugged this morning again and is leaking from the the placement site, they talked like they may have to replace it. His drain has bothered him more than the incision. I hope they can leave it alone. Today we get to be off of the tpn for 8 hours. They will still give him the same amount just in different intervals. They prick him a few times to check his sugar. He hates that. He is getting so he wants to be covered up with a blanket especially when the nurse is in the room.
We are still praying for a miracle. We have felt so much love through all of this and still feel so blessed for the sweet little spirits that Heavenly Father sent us. Excuse all the typos I write this on my phone and auto correct is only so good:)
Saturday and Sunday Garrett wouldn't let us pick him up. He would say bed every time you moved him and had a low grade fever, we couldn't seem to stay on top of the pain. Monday was a complete opposite, he wanted to go on his "walk" and then played awesome. Monday was my low day. With everything we have read most of the lymphatic leaks we have found are a sit it out and wait. They had finally put him on a bland low fat diet which does wonders for his spirit. His drain atomatically started to go cloudy. About 3/4 of the day they put him back to clear liquids. As a parent you just want to kiss it all better and solve the world. Dr Fishman told us there are to 100% answers to this. There just isn't enough cases to know what works. We have been in Boston for two weeks now and many days it feels like we are regressing. His output is higher than it was pre surgery which gets discouraging.
The night before last he had no output. We have loved our nurses, and our night nurse was ecstatic. About 7:30 I changed Garret's diaper. It was saturated as where our bed linens. His drain was plugged. He was in a lot of pain most of yesterday. About 4:30 they came and flushed it. He had only had about 70 ml output all day compared to 1300 the day before. After the flush the pulled about 600 ml off in a two hour time period. They had also pulled all his Iv pain meds the night before last. They say the oral works a lot better and last longer, trying to talk your two year old into that theory at 1:00 in the morning is a little stressful:) he spits it back in your face and is determined not to take it. When he woke up for the morning we couldn't keep up with the pain. After he took the medicine we'd fill up the srynge and let him squirt it at john. He was pretty good when he was awake.
They did another ultrasound ( we had one on Monday also) there was to much fluid yesterday to tell much. He has a small cyst they are hoping to inject with a scarring agent to see if that will slow down the flow.
His drain is plugged this morning again and is leaking from the the placement site, they talked like they may have to replace it. His drain has bothered him more than the incision. I hope they can leave it alone. Today we get to be off of the tpn for 8 hours. They will still give him the same amount just in different intervals. They prick him a few times to check his sugar. He hates that. He is getting so he wants to be covered up with a blanket especially when the nurse is in the room.
We are still praying for a miracle. We have felt so much love through all of this and still feel so blessed for the sweet little spirits that Heavenly Father sent us. Excuse all the typos I write this on my phone and auto correct is only so good:)
Friday, August 7, 2015
Maggie is coming!
I have put off writing mainly because of the roller coaster up and down emotional days. We had surgery on Tuesday, everything went well. We woke up at 5:00 am to eat ice team so they could see the leak better. Garrett has loved going on walks here. He talks about it I his sleep. He woke up about 4:30 and I said walk and he was all about it. After cruising the halls a little we went and sat I bed, ate ice cream and watched toons. About 6:30 they came and got us, letting someone take your baby while they cry and beg for you will forever be one of the hardest things I think I will ever have to do. For seven hours we waited. They infused his stomach with straight whipping cream once he was sedated. They had to find cut about an inch longer incision. They did find the leaks, two places that were right where his last surgery took place. There is also a pocket of fluid accumulation. For the first few hours and into the night there was no leakage and we were ecstatic, about three thirty in the morning it started gushing out faster than it had before. We were sick. We are still praying for a miracle that it will stop.
Today is Thursday, we have had some hard nights with little sleep. They put in an epidural and catheter. The narcotic in the epidural made him itch like crazy. We are pretty sure he pulled his epidural drip out of place. It would drop and leak on you like crazy. His heart rate would stay at about 150-170 and elevate to 200. Before it had stayed closer to 100-120 and lower when he would sleep. Every time he would fall asleep he would jump and startle himself. We were not staying up on the pain. Last night they replaced the narcotic with Iv ??? But could not stay up with the pain. He was miserable. They face him Iv ib proven and a muscle relaxer. That worked wonders and for the first time since Tuesday he is comfortable with his heart rate down to 113 right now. He is sleeping sound for the first time in a few days. I think he is exhausted. They also gave him a suppository and he was able to go to the bathroom. I never thought I'd be so excited over my baby pooping.
I have loved our nurses. I have also hated with the exception on one our nurse assistents. They wake him up EVERY time the come to do his vitals. It makes me livid, especially when he is so worn out. I'm currently wearing his oxygen meter since he kicked it off and to avoid someone coming in.
Maggie is coming today!!! I can't tell you how excited I am to see her and hold her. My heart has hurt for her:) Michelle is flying out with her right now! I love my sweet family and all that they do!!
Garrett's output is tapering off but he has been on a fast since surgery so with nothing in his gut it should. His catheter gets to come out once he wakes up and they removed his epidural. He is very week, very pale, and very sore. Keep praying:)
Today is Thursday, we have had some hard nights with little sleep. They put in an epidural and catheter. The narcotic in the epidural made him itch like crazy. We are pretty sure he pulled his epidural drip out of place. It would drop and leak on you like crazy. His heart rate would stay at about 150-170 and elevate to 200. Before it had stayed closer to 100-120 and lower when he would sleep. Every time he would fall asleep he would jump and startle himself. We were not staying up on the pain. Last night they replaced the narcotic with Iv ??? But could not stay up with the pain. He was miserable. They face him Iv ib proven and a muscle relaxer. That worked wonders and for the first time since Tuesday he is comfortable with his heart rate down to 113 right now. He is sleeping sound for the first time in a few days. I think he is exhausted. They also gave him a suppository and he was able to go to the bathroom. I never thought I'd be so excited over my baby pooping.
I have loved our nurses. I have also hated with the exception on one our nurse assistents. They wake him up EVERY time the come to do his vitals. It makes me livid, especially when he is so worn out. I'm currently wearing his oxygen meter since he kicked it off and to avoid someone coming in.
Maggie is coming today!!! I can't tell you how excited I am to see her and hold her. My heart has hurt for her:) Michelle is flying out with her right now! I love my sweet family and all that they do!!
Garrett's output is tapering off but he has been on a fast since surgery so with nothing in his gut it should. His catheter gets to come out once he wakes up and they removed his epidural. He is very week, very pale, and very sore. Keep praying:)
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