**Sorry for the delayed post about yesterday's treatment. I was in the middle of writing it and fell asleep!**
Monday, March 18th (Day -7)
Another day of chemo is complete and Logan and I are once again so grateful for how well things continue to go. Eli is a total rock star and handled his third 8 hour dose like a champ! The doctors expected him to stop eating within a couple days and he is still eating, in their words, like a piggy :) He's still sleeping a lot during the day and not much at night because the meds they give him make him tired but it hasn't been too bad because Logan has been off work and can take over during the day while I catch up on some sleep. Thank goodness for such an awesome daddy!
Eli's central line still looks really good and is working great so they took out his picc line today. I'm a major wuss and hate to be around when they do those things so I always go for a walk and let Logan stay with Eli. Everything went really well and he now has both arms free of any type of line! Happy day!
After tomorrow's treatment he'll already be halfway done!
3 days down, 5 days to go!
Tuesday, March 19th (Day -6)
We are officially halfway done with chemo! Logan and I are so proud of our little fighter. Eli had another great day and handled everything really well. The doctors keep expressing how impressed they are with how well he's eating and tolerating the chemo. We knew a long time ago we had such a strong little guy! Because his counts are continuing to decrease, he will be susceptible to just about anything and today he developed a pretty wicked diaper rash. We've been using a cream after every diaper change but there's really no way to prevent it. His little bum was only slightly red this morning and by this evening it was already bleeding :( We were able to get him some pretty strong cream to put on it so hopefully that helps a bit.
We had a monumental moment last night! Eli typically eats every hour and a half and sometimes he'll go two hours which means I'm up close to every hour at night. I haven't hated it too much because he's gaining weight so well and I'm able to take a nap during the day if I need to. Last night he went down shortly after 9:30 and I went to bed around 10:30 knowing he would be waking up any minute. I heard him crying and woke up and it was 2:30! I had to stare at the clock forever to see if I was having a hallucination or something. Our nurse even came in and couldn't believe he had slept so long. I didn't want to get too excited right away though because I was sure he was going to eat and be wide awake since he had slept so long but he ate and went back to bed for another 3 straight hours. It was amazing and I felt like a new woman today! Fingers crossed he can do that again!
For the next 4 days Eli will get two new chemo medicines so we're hoping he tolerates those as well as he has the first medicine. The past four days he has received one 8 hour dose each day and starting tomorrow he will have a 2 hour dose every 6 hours for the next 4 days. Sunday he will have a rest day and Monday will be his transplant!
We are so grateful for all of the prayers that have been said on his behalf and know they are the reason he has done so well. It is such a comfort to know so many people are supporting us and sending good thoughts our way. Thank you, thank you!
4 days down, 4 days to go! Fight on, little Eli!
Ps...Sorry for the lack of pictures. I have been a slacker the past couple days but I will do better tomorrow!
Tuesday, March 19, 2013
Sunday, March 17, 2013
~Chemo: Day -8~
Wow...what another wonderful day! Our little fighting champ is doing so well and tackled his second day of chemo like it was his job. Eli continues to eat, sleep and interact great so Logan and I feel very happy about the first two days. The worst thing that's happened so far is his schedule seems to be switched so he slept most of the day yesterday and from 2:00am-6:30am he only slept for about 30 total minutes. I was exhausted this morning but if that's the worst of my worries so far I definitely can't complain! Fortunately he was awake quite a bit more today so hopefully we can get better sleep tonight.
Up until we started chemo I had Eli's med schedule memorized so I always knew what to expect but now that he started his treatments I don't stand a chance of keeping track of everything! In a 24 hour period, Eli receives 13 different medications multiple times a day. The majority of his meds are given through his line which is so nice because he absolutely hates his oral ones. On top of his meds, he has to have mouth care every four hours which consists of the nurse swabbing his mouth with two different antibiotics to help keep any germs out in case he develops mouth sores from the chemo. If we ever have to give him medicine at home in the future for something it will probably seem like a piece of cake compared to what he gets now!
One thing I absolutely love is celebrating holidays whether it's a small or big one. Logan is always such a good sport to put up with my ideas and I was so excited to have Eli around for them this year! Unfortunately being in the hospital makes it difficult to do much and I totally forgot it was even a holiday today :S I desperately searched through Eli's wardrobe for something green but he's still wearing newborn clothes so the selection was quite limited. This is all I could find:
I am determined to do better the rest of the time we're here so thankfully I have a chance to redeem myself in a couple weeks on Easter!
Up until we started chemo I had Eli's med schedule memorized so I always knew what to expect but now that he started his treatments I don't stand a chance of keeping track of everything! In a 24 hour period, Eli receives 13 different medications multiple times a day. The majority of his meds are given through his line which is so nice because he absolutely hates his oral ones. On top of his meds, he has to have mouth care every four hours which consists of the nurse swabbing his mouth with two different antibiotics to help keep any germs out in case he develops mouth sores from the chemo. If we ever have to give him medicine at home in the future for something it will probably seem like a piece of cake compared to what he gets now!
One thing I absolutely love is celebrating holidays whether it's a small or big one. Logan is always such a good sport to put up with my ideas and I was so excited to have Eli around for them this year! Unfortunately being in the hospital makes it difficult to do much and I totally forgot it was even a holiday today :S I desperately searched through Eli's wardrobe for something green but he's still wearing newborn clothes so the selection was quite limited. This is all I could find:
| Lame, I know |
Lovin his chill time with daddy :)
Eli has now completed 2 of 4 days of his first chemo med and will switch to two different chemo meds on Wednesday. Fingers crossed he continues to handle things so well! 2 days down, 6 to go!
Saturday, March 16, 2013
~Chemo: Day -9~
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Here at the hospital, the day of Eli's bone marrow transplant is considered Day 0. Every day before is a negative day and every day after is a positive day. If all goes well, the doctors hope to lift some (but definitely not all) restrictions by day 100. Because Eli started his chemo today, it is day -9.
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Two days ago Eli went under sedation again to have his central line replaced. After the first one was put in, it was infected within 24 hours and removed after 48. Our main goal the past couple days has been to keep his new line extremely clean and to do everything we can to keep it from getting infected. Everyone has been watching it very carefully and it has looked really good. The plan was to pre-medicate Eli pretty early this morning and then begin his first 8 hour dose of chemo by 8:00am. I finished feeding him and went to change his diaper and when I checked his line it was bright red and puffy! :S His nurse and doctor came and looked at it and couldn't believe he was already reacting to it again. Because his first line got infected so fast, they kept him on a very strong antibiotic to help prevent his new one from getting infected so Eli's medical team is thinking it's maybe not infected but possibly just irritated. Keeping the central line in is very important so they decided to put some steroid cream on his chest and watch it very closely. A few hours after we put the cream on, the redness was almost gone so that is a huge blessing!
Because of the scare with the line, we got started a bit late with the chemo but everything since then has gone very smooth. A new IV pole was brought in to accommodate all of the medications Eli is receiving around the clock. Typically he only has 1 IV pump and now he needs 3.
The pre-medications are given to help prevent an allergic reaction to the chemo. If Eli was going to have an allergic reaction to the medicine, it likely would have happened within the first 15 minutes so we were feeling great once we made it passed that point. Let's fast forward 8 hours because nothing out of the ordinary happened throughout the entire dose of chemo and that's exactly what Logan and I like! The doctors tell us that it may take a while for Eli to experience the symptoms of the medicine but we are very grateful to have made it through the first day with him feeling so good. They expect him to stop eating at some point but he ate like a champ today so we are feeling extremely happy and blessed!
One day of chemo down, 7 more to go!
Here at the hospital, the day of Eli's bone marrow transplant is considered Day 0. Every day before is a negative day and every day after is a positive day. If all goes well, the doctors hope to lift some (but definitely not all) restrictions by day 100. Because Eli started his chemo today, it is day -9.
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Two days ago Eli went under sedation again to have his central line replaced. After the first one was put in, it was infected within 24 hours and removed after 48. Our main goal the past couple days has been to keep his new line extremely clean and to do everything we can to keep it from getting infected. Everyone has been watching it very carefully and it has looked really good. The plan was to pre-medicate Eli pretty early this morning and then begin his first 8 hour dose of chemo by 8:00am. I finished feeding him and went to change his diaper and when I checked his line it was bright red and puffy! :S His nurse and doctor came and looked at it and couldn't believe he was already reacting to it again. Because his first line got infected so fast, they kept him on a very strong antibiotic to help prevent his new one from getting infected so Eli's medical team is thinking it's maybe not infected but possibly just irritated. Keeping the central line in is very important so they decided to put some steroid cream on his chest and watch it very closely. A few hours after we put the cream on, the redness was almost gone so that is a huge blessing!
Because of the scare with the line, we got started a bit late with the chemo but everything since then has gone very smooth. A new IV pole was brought in to accommodate all of the medications Eli is receiving around the clock. Typically he only has 1 IV pump and now he needs 3.
| Not happy about me taking pictures with the flash |
| Such a happy little fighter! |
Monday, March 11, 2013
~A Name and a Blessing~
Before Eli was born, I did what I think many other first time parents do and tried to imagine what several "firsts" would be like. Many of those things have been similar to how I imagined them but one thing that was quite different was his baby blessing. When I thought about Eli's blessing before he was born, I imagined it being in sacrament meeting with all of our friends and family gathered around--not in a hospital room with only a couple people present. The best part about it all? It was even more wonderful than I ever could have hoped for!
Before we got to the hospital, we figured we would bless Eli sometime in April when it started warming up a bit and there wasn't so much sickness in the air. After he was admitted, we talked about it and knew we would have to do it in the hospital but decided to do it around the same time still. When we were fortunate enough to find his match so fast and learned that he would be starting chemo in such a short time we planned the blessing right away because we knew we wanted it done before he started his treatments. Both mine and Logan's dads were able to come in and assist with the blessing which was so great. Eli slept through the entire thing (pictures included) and Logan gave the most remarkable blessing to our sweet little boy. I know everyone says this but it truly is wonderful to have a husband that honors his priesthood so well. Yesterday was definitely a day I will never forget!
Eli was also lucky enough to share his blessing day with his cousin Lily. I snuck out of the hospital for a bit while Logan stayed with Eli so I could see Lily blessed. She looked absolutely beautiful and her daddy gave her the perfect blessing. I'm so happy I was able to go!
Update on our little boy:
Before we got to the hospital, we figured we would bless Eli sometime in April when it started warming up a bit and there wasn't so much sickness in the air. After he was admitted, we talked about it and knew we would have to do it in the hospital but decided to do it around the same time still. When we were fortunate enough to find his match so fast and learned that he would be starting chemo in such a short time we planned the blessing right away because we knew we wanted it done before he started his treatments. Both mine and Logan's dads were able to come in and assist with the blessing which was so great. Eli slept through the entire thing (pictures included) and Logan gave the most remarkable blessing to our sweet little boy. I know everyone says this but it truly is wonderful to have a husband that honors his priesthood so well. Yesterday was definitely a day I will never forget!
| Lookin' studly in his outfit from Grandma Janet |
| Still can't get over how much I love his shoes! |
| Love these two so much! |
Eli was also lucky enough to share his blessing day with his cousin Lily. I snuck out of the hospital for a bit while Logan stayed with Eli so I could see Lily blessed. She looked absolutely beautiful and her daddy gave her the perfect blessing. I'm so happy I was able to go!
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| Eli and Lily will be great friends as soon as he's healthy enough to play! |
We have now reached the week that everything begins! I remember us talking with the doctors the day Eli was diagnosed about everything that we would do here at the hospital and it seemed ages away so it's hard to believe it's already here! (Keep in mind it has happened way quicker than even the doctors expected!) We are very excited to get everything started but it's definitely bitter-sweet. I try not to think about what Eli will actually go through too much and just focus more on the fact that we are one step closer to getting him healthy and home.
Assuming the plan doesn't change, Eli is scheduled to begin chemo on Saturday the 16th. He has 8 straight days of chemo with the first 4 apparently being the toughest on him. Luckily Logan has all those days off so it will be nice to be together. After he finishes chemo, Sunday the 24th will be his rest day and then he'll have his BMT on Monday, March 25th!
Before we get to Saturday, there are still a few things that have to happen. They will draw quite a bit of blood this week in order to prep him for his treatments. He had his third blood transfusion yesterday and did great with it. His picc line is working great but he has to have a central line for transplant so he will have that replaced on Thursday. Fingers crossed this one doesn't get infected! While he's sedated, they will also repeat the hearing test, ENT will examine his ears more thoroughly and he will likely have molds taken for his hearing aids.
Here are a few pictures we've taken lately:
Here are a few pictures we've taken lately:
Oh the joys of bathing him with a picc line! It's definitely easier than a central, that's for sure. You can see on his chest where his central line was infected. It looks loads better now than it did a short time ago. You can also see his poor red cheeks from the oxygen stickers. He gets a short break from them every once in a while.
Later this week we should have another update when we start chemo. Until then, this is officially our consultation week because we'll meet with many different teams of doctors as they prep us and Eli for chemo and his transplant.
Once again, we can't express enough thanks to everyone for all you continue to do for me, Logan and Eli. We are amazed at the generosity, love and concern others have shown to us. We couldn't do it without each one of you!
Monday, March 4, 2013
~2 Month Birthday Present~
Our beautiful baby boy turned 2 months old today! Despite everything we have discovered about his health the past few weeks, we can genuinely say we're having the time of our lives being Eli's parents. Not a day goes by that we don't feel so much joy because he's a part of our family. Happy 2 month birthday, little champ!
Eli's Scoop:
-Eli currently weighs 8lb 10oz (to many of you that probably seems tiny for a 2 month old but considering he got down to 4lb 14oz that is fantastic in our eyes! He has been gaining weight really well since he got to the hospital which the doctors are very pleased about!) He's starting to get chunk on his cheeks and we love it!
-He still wears newborn diapers and probably will for a while longer.
-He really fills out his newborn clothes now and is starting to fit into some of his 0-3 month outfits. I brought almost his entire wardrobe of clothes (up to 6 months) here to the hospital otherwise he might never wear any of them!
-I've said this a couple times already but he LOVES the bath and will sit in it and chill forever if we let him and as long as the water is really warm.
-About 2 weeks ago I had to stop breast feeding because they discovered I had been exposed to the CMV virus when I was younger and it can be passed through breast milk so we couldn't risk Eli getting it. I was nervous about the transition to formula but he has done quite well and continued to gain weight like a champ!
-His two least favorite things (so far) at the hospital are getting his temperature and blood pressure checked. I honestly think he'd rather get his blood drawn than either of those two things! Unfortunately they happen every 4 hours :S.
-Eli LOVES his daddy! He's with me all day so I'm nothing special but when his dad comes home from work he'll just stare at him forever and loves to play with him!
2 Month Birthday Present:
No, Logan and I didn't give Eli a two month birthday present but the doctors gave him the best present possible! We were informed today that they found Eli's match! We weren't expecting it to be found for another month at least! The doctors told us that it would take about 2-3 weeks to find his match once it went into the system and it was found a mere few hours after. We are completely overjoyed and still shocked that we have been given this great blessing. We know, without a doubt, that it is because of all of your thoughts and prayers that we have witnessed this miracle. Even though he can't tell us, we know Eli is ecstatic as well! :)
The Updated Plan:
We have been here in the hospital for almost 3 weeks now and were originally told that he wouldn't have his transplant for about 2-3 months. Because they already have his match, we will get going right away. The match they found is a cord blood match, not a live donor match, which is what the doctors were hoping to find. There are many great things about having a cord blood match and one of those is how much quicker we can get started. Had they found a live donor match today, Eli's transplant wouldn't take place for a couple more months because we'd have to wait for that person to go donate their bone marrow, etc. Because we have a cord blood match, it is already frozen and ready to go so it will be sent to the hospital and should arrive in about a week. As soon as it is in the hospital's possession, the chemo will begin. We haven't had an in-depth discussion about the details of the chemo and transplant yet but we have a rough idea of the timeline. Chemo should take about a week and then the bone marrow transplant will take place right after which means Eli will probably have his transplant in about two weeks!
We are so grateful for the incredible amount of fasting, prayers, thoughts and love that have taken place in our behalf. Logan and I know that the reason we have witnessed so many miracles already is because of each one of you. While it can be nerve wracking to think about the treatments that Eli will have to go through in a few weeks we find so much comfort in everyone's support and the knowledge that he has many angels watching over him.
As it has been for the past 3 weeks, our main goal continues to be to keep Eli healthy until his treatments begin. Eli's doctors told us today that his immune system is quite worse than even most SCID patients which is one of the main reasons we are so grateful his match came back so fast--he really wouldn't be able to fight much of anything if he were to catch a bug right now. Thankfully the hospital keeps this unit very clean and he won't have any visitors so we are confident he will stay healthy until his chemo begins.
We never imagined that Eli's two month birthday could be so exciting and filled with such wonderful news!
Fight on, little Eli!
Thursday, February 28, 2013
Home Sweet Home
When we were initially told our stay here in the hospital would be 4-6 months I was quite shocked. It's hard to imagine living away from home for that long, especially when your little family can't be together all the time. They brought us to our cozy room and my first thought was: "I have to make this place feel more homey asap. I can't possibly live in a plain hospital room with a jail cell-like-crib for that long." A few cousins drew Eli some pictures, we brought in a few pictures of our little guy and some children's books and switched out my hospital bedding for some of our own blankets and things started to feel better right away :) It's not much, but it feels much more like home than before!
The doctors said only 5% of my cells are in his body so not too many. Once he has his chemo it will get rid of his cells and my cells so he will be fine after that and they'll just keep a close eye on him until then.
FIGHT ON LITTLE ELI!
I can't remember if I already mentioned it in a previous post but only one parent is allowed to spend the night regularly but they will make special accommodations if something is going on. The night before Eli's procedure last week Logan stayed over and it was quite horrible because Eli was upset (because he was starving) and both Logan and I were trying to sleep on that tiny bed. For me, it's a little easier saying goodbye to Logan each night now because I know he's going home to get much better rest than he would here and I'm able to sleep more soundly as well.
The past 48ish hours have been rough for our sweet little boy. His central line was placed Saturday and by Monday it was already infected. Because he has no immune system they have to be very careful with him getting any infections at all. They started him on a pretty strong antibiotic but after 24 hours it still hadn't gotten any better. On Tuesday evening they had to remove the central line (fortunately this was just done at his bedside while he was awake) and place a regular peripheral IV. Not only was I super bummed out that he had an infection, I was just as discouraged that he would have to go under sedation again to replace the central line at some point. On Wednesday morning his IV went bad so they had to replace it and on Wednesday evening that IV went bad too so they had to replace it again. This morning when they were running his antibiotic I went to change his diaper and noticed his foot was wet so I looked at the IV and saw that it was leaking and his ankle was pretty puffy. I called the nurse right away because the antibiotic he's on is quite strong and can do damage to the skin and tissue if it gets in there at all. They stopped the antibiotic and removed the IV and of course had to come place a new one, 4th in the last two days, so they could finish the antibiotic. After they finished placing the IV they had to give him 5 shots in his foot in order to prevent the antibiotic from spreading :( Thank goodness Logan has had the last two days off work because it allows me to leave the room when these awful things happen and he can stay and comfort our little guy. While I've known from the beginning that there will be good days and tough days, it still doesn't make the tough days any easier. When he's going through a lot and seems so sad I have to remind myself that he really has been doing so well and most days are really good. A few days ago was one of those happy days:
Because he's had so many failed IVs, they worry about the risk of infection increasing because they have to continue placing a new one so often. They can't replace the central line yet because his little chest is still infected so they decided to find something in the middle so tomorrow they will place a picc line in his arm. From what I understand, a picc line is pretty similar to a central line but it's not quite as permanent so he will still have to have the central line put in before his treatments. One thing I'm definitely not looking forward to with him getting the picc line tomorrow is the sedation because the sedation means he can't eat again :S. We got some good news regarding that, however! I'm not sure why in the world they made him go so long without food the first time because they just told us he needs to stop eating six hours before the surgery but he can have Pedialyte up until 2 hours before. Hallelujah! We can definitely do 2 hours way better than half the day like last time. Tonight might not be so bad after all!
More News:
The doctors make their rounds every morning so they can come check on Eli and see how he's doing and also give us any news they might have. They told us to plan on this week being pretty quiet with not much to report since we're still a week to two weeks away from finding out what his bone marrow typing is so we were pretty surprised when they came in this morning with two bits of news. News #1: They finally discovered what his rash is from! It has been the biggest mystery to everyone from me and Logan all the way up to every specialist here at the hospital. They've been getting blood from me periodically so they can see if I passed any viruses to Eli during pregnancy and it turns out I actually passed some of my cells to him. Even though he doesn't have much of an immune system he still has a bit of one so when my cells finally settled down into his body they basically started fighting with his cells and that's why he broke out in this wicked rash. I wish I had taken a picture of his whole body but things were crazy at that time so I totally forgot. You can get a pretty good idea what it looked like from this picture:
| Every inch of his tiny body was covered like this :( Fortunately it's nowhere near this bad now as you can see in the picture above) |
News #2: Eli's bone marrow typing came back today! They originally told us to plan on 2-3 weeks and it has only been a week and 2 days :). Unfortunately the database they throw his typing into to determine which type of match he needs is down for maintenance but they are hopeful it will be up and running by Monday and then we will have a better idea how long they think it will take to find a donor depending on how rare or common his typing is. When I mentioned to his doctors that the typing came back a lot quicker than they expected he said they put a rush on it and asked them to get it back as soon as possible. Thank goodness for the amazing staff here at PCMC! (Although Logan and I know the real reason it came back so fast is because of everyone's prayers on our behalf so thank you, thank you!)
As they were leaving, his medical team said they are very pleased with how well he is thriving and gaining weight since he's been here and told me and Logan to continue doing whatever we're doing because it's working. That was music to our ears and so comforting to hear!
Shoutout:
Logan and I are completely amazed and humbled at the amount of support we have received since Eli came to the hospital. I don't think any of you realize how much your prayers, thoughts, comments, and offers for help truly do bring us comfort and strength to get through each day. It is so reassuring to know that we have so many people there for us that are cheering our little guy on and praying for him so hard. If we aren't able to respond to every comment, phone call, text or message right away please know that we cherish each one of them and can't thank you all enough. If there is ever a way to repay each one of you for all of your love and concern we absolutely will. THANK YOU!
A peek into the life of our little man:
| Eli LOVES the bath! (The water has to be quite warm or he has a fit!) |
| Checkin' himself out...little man knows he's a stud! |
| Not lovin' this tummy time business |
| Trying SOO hard to hold his head up! Haha |
Saturday, February 23, 2013
Fight On
Yesterday was a big day for our little champ. Eli needed to have 3 procedures done under sedation so rather than putting him under 3 different times they coordinated all three tests so he'd only have to be sedated one time. The evening before, the doctor came in to tell us what to expect and then finished by saying that he was scheduled for 10:00am and that he couldn't eat anything after midnight. Umm...what? Eli is nowhere close to sleeping through the night and still eats every 2-2.5 hours! I was immediately dreading the night. How in the world are you supposed to make a baby go so long without eating? My heart was already breaking for him and the night hadn't even started! I was able to get him to finish a feeding right at midnight and then fortunately they allowed him to have unflavored Pedialyte until 5:00am. I was hopeful that he would get a lot of sleep from 12:00-5:00 but unfortunately he got almost zero. The nurses were in and out constantly so Eli, Logan or I didn't get much sleep at all. They drew his blood twice, took a chest x-ray, checked his vitals and and checked his IV constantly throughout the night so he was not a happy camper. I finally got him to fall asleep a little after 5:00 and was hoping he would sleep for close to 3 hours because then there would only be an hour and a half of crying until they came and got him around 9:30. He had other ideas and woke up a couple minutes after 6:00 ready to eat. He didn't mind the Pedialyte but there's not much to it so I'm sure it went right through his system. I braced for the worst and try to do everything I could to comfort him starting at 6:00 and just hoped the next 3.5 hours went by fast. Around 9:30 when they were supposed to come get him the nurse came in and said they were running behind and they would come for him at 10:15ish. Fantastic. At 10:15 she came in again and said they would come at noon because they were still behind. At this point he will have gone 12 hours without really having much to eat. I felt so horrible for him! 12:00 came and once again, we were informed they were behind and they were hoping to get him by 12:45. I honestly thought my poor, tiny baby would starve to death! (Not really) Finally we got some good news and at 12:15 they were on their way up. It was no doubt the longest 12 hours I can remember in a long time!
The first thing they had to do was put in a central line. For those of you that don't know what it is, because I sure didn't before we got here, it's basically an IV that goes in his chest and straight to his heart--the thought of that still freaks me out. It's much more long term than an IV (it will stay in the entire time we're here) and not only can they give him fluids or medication with it but they can also draw blood from it. This will be so nice to have because since we've been here they've had to poke him constantly, sometimes multiple times a day, and I feel horrible every time they do. The central line placement was successful and it is working great.
The second thing they did was an echocardiogram and that too was successful. It is a standard procedure they do for all of their bone marrow patients to ensure the heart is functioning properly before they go through chemo and the transplant. Everything with his heart looked fantastic so that made us very happy.
The third and final thing they had to do was an in depth hearing test. This is also a standard procedure they do before the transplant because they want to make sure their hearing isn't damaged during the treatment but our situation also happened to be a little different. When Eli was born he didn't pass his newborn hearing screening and at the time they told us they thought it was because he still had fluid in his ears. We didn't think too much of it and scheduled a more in depth test a little down the road. After Eli was diagnosed with SCID, they were trying to determine which type of SCID he has and discovered that he showed many of the signs of the type of SCID called Reticular Dysgenesis. One of the common sings of this type of SCID is hearing loss. When the doctors told us that last week we were a little worried because we (at least I) was hoping the newborn hearing screening was inaccurate. Looking back, I'm glad they told us it was a possibility he'd have hearing loss because we were more prepared for what the audiologist had to tell us.
On top of everything else our little guy is already dealing with, they discovered yesterday that he also has profound hearing loss in both ears. They said that there is possibly some fluid in his ears still and when this is gone there's a chance his hearing could improve some but that he will definitely have permanent hearing loss. If you had told me before Eli was born that he was going to have hearing loss I probably would have been heart broken. Surprisingly, when the audiologist told us the news both Logan and I were quite calm and comforted. We already felt like we were blessed with a pretty amazing little spirit and this just confirmed that for us. We have no doubts that he will grow up to be a pretty strong little guy for all he is going to overcome.
The steps we now have to take as far as his hearing intervention goes are still quite unclear. For one, they need to find out if his hearing will improve at all once the fluid (if there is any) is gone. Typically they would put tubes in his ears to help get rid of the fluid but because there is a risk of infection with tubes and he has no immune system his doctor doesn't want them in right now. The audiology staff is going to meet with Eli's medical team next week to determine a plan of action so we'll know more then. Until then, we are loving our little boy just the same and are so grateful he's ours. What a unique, special journey we have ahead of us as a family.
As Logan and I have continued to process everything that's taken place since Eli was diagnosed almost a week ago, I had another Dr. Seuss story come to mind. (Pardon my constant reference to children's stories. I guess that's what a teaching degree will do to you and I love the messages they teach.) This particular story is called Horton Hatches the Egg. For those of you not familiar with this one, it is about a bird named Mayzie that convinces Horton to sit on her egg while she takes a short break that ends up lasting for months. Even though Horton looks completely ridiculous sitting on Mayzie's egg and is constantly made fun of, he never leaves the egg and continues to say to everyone: "I meant what I said and I said what I meant, and an elephant's faithful, 100%!"
The first thing they had to do was put in a central line. For those of you that don't know what it is, because I sure didn't before we got here, it's basically an IV that goes in his chest and straight to his heart--the thought of that still freaks me out. It's much more long term than an IV (it will stay in the entire time we're here) and not only can they give him fluids or medication with it but they can also draw blood from it. This will be so nice to have because since we've been here they've had to poke him constantly, sometimes multiple times a day, and I feel horrible every time they do. The central line placement was successful and it is working great.
The second thing they did was an echocardiogram and that too was successful. It is a standard procedure they do for all of their bone marrow patients to ensure the heart is functioning properly before they go through chemo and the transplant. Everything with his heart looked fantastic so that made us very happy.
The third and final thing they had to do was an in depth hearing test. This is also a standard procedure they do before the transplant because they want to make sure their hearing isn't damaged during the treatment but our situation also happened to be a little different. When Eli was born he didn't pass his newborn hearing screening and at the time they told us they thought it was because he still had fluid in his ears. We didn't think too much of it and scheduled a more in depth test a little down the road. After Eli was diagnosed with SCID, they were trying to determine which type of SCID he has and discovered that he showed many of the signs of the type of SCID called Reticular Dysgenesis. One of the common sings of this type of SCID is hearing loss. When the doctors told us that last week we were a little worried because we (at least I) was hoping the newborn hearing screening was inaccurate. Looking back, I'm glad they told us it was a possibility he'd have hearing loss because we were more prepared for what the audiologist had to tell us.
On top of everything else our little guy is already dealing with, they discovered yesterday that he also has profound hearing loss in both ears. They said that there is possibly some fluid in his ears still and when this is gone there's a chance his hearing could improve some but that he will definitely have permanent hearing loss. If you had told me before Eli was born that he was going to have hearing loss I probably would have been heart broken. Surprisingly, when the audiologist told us the news both Logan and I were quite calm and comforted. We already felt like we were blessed with a pretty amazing little spirit and this just confirmed that for us. We have no doubts that he will grow up to be a pretty strong little guy for all he is going to overcome.
The steps we now have to take as far as his hearing intervention goes are still quite unclear. For one, they need to find out if his hearing will improve at all once the fluid (if there is any) is gone. Typically they would put tubes in his ears to help get rid of the fluid but because there is a risk of infection with tubes and he has no immune system his doctor doesn't want them in right now. The audiology staff is going to meet with Eli's medical team next week to determine a plan of action so we'll know more then. Until then, we are loving our little boy just the same and are so grateful he's ours. What a unique, special journey we have ahead of us as a family.
As Logan and I have continued to process everything that's taken place since Eli was diagnosed almost a week ago, I had another Dr. Seuss story come to mind. (Pardon my constant reference to children's stories. I guess that's what a teaching degree will do to you and I love the messages they teach.) This particular story is called Horton Hatches the Egg. For those of you not familiar with this one, it is about a bird named Mayzie that convinces Horton to sit on her egg while she takes a short break that ends up lasting for months. Even though Horton looks completely ridiculous sitting on Mayzie's egg and is constantly made fun of, he never leaves the egg and continues to say to everyone: "I meant what I said and I said what I meant, and an elephant's faithful, 100%!"
After
51 weeks of sitting faithfully on Mayzie’s egg, the selfish bird suddenly
returns and demands the egg that she as abandoned. But
it’s mine! Screamed the bird, when she
heard the egg crack. The work was all
done. Now she wanted it back. It’s
my egg! She sputtered. “You stole it from me!” Get off of my nest and get out of my tree!” Poor
Horton back down with a sad, heavy heart. But
at that very instant, the egg burst apart!
And out of the pieces of red and white shell, from the egg that he’d sat
on so long and so well, Horton the Elephant saw something whizz! It
had ears and a tail and a trunk just like his! And
the people came shouting, “What’s all this about….?” They looked and they stared with their eyes
popping out! Then they cheered and they
cheered and they cheered more and more.
They’d never seen anything like it before. My
goodness! My gracious! They shouted.
My word! It’s something brand
new! It’s an elephant bird and it should
be, it should be, it should be like that!
Because Horton was faithful. He
sat and he sat. He meant what he said
and he said what he meant. And they sent
him home happy 100%.
This will no doubt be the most difficult thing Logan or I has ever had to go through but we both know that we can leave this trial behind and go home 100% happy if we stay faithful and grateful for the blessings we continue to receive each day.
Next post I'll make things a little bit more exciting and add some pictures of our new humble abode :)
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