Heart Surgery

Malachi's Heart Surgery

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little by little

The days are getting better little by little. We are all adjusting to life outside of the hospital and its not been easy on any of us. However we have been blessed with some AMAZING people who have been brining us dinners! It so great to not have to worry about that.

Have to go, daddy needs help with the little man!!

fussy

We are STILL dealing with a VERY fussy baby. It seems like all he is doing is crying and sleeping. We have seriously tried everything. I thought maybe it was gas so we got gas drops. I thought maybe a fever, but no fever. I thought maybe something hurt so we tried ty. no luck. He doesnt want to be held or put on his back. He doesnt want to sit up in his jumparoo. NOTHING. He just want to be crabby and ts starting to make me crabby. I think Josh and I only got about 4 hours of sleep total. He was even crying in his sleep! Any ideas? He still has the poops so I wonder if he has a little virus? We go to the doc on friday so I am hoping we can wait till then otherwise we may be taking a trip back to the er because ive got no clue!!! He does have a stuffy nose, we try sucking it out but very litle comes out. I am trying to get an appoinment at the ENT to see about his adnoids. It sounds like he chokes on his boogers and then coughs and then cries and the more he gets upset, the more this happens.

I just want 1 day of a little less crying and a little more sleeping for the mama!

A post...

....FROM HOME!!!!! We got home last night and boy I have never been so excited to the Christmas wreaths still hanging on the lights by the garage! (yep, they are still up from Christmas, my neighbors prolly hate me!) Things at home were the same as usual, laundry in the dryer, junk on the kitchen table and clothes on the bedroom floor..ahh its good to be home! Peewee seems to be doing great! He was all smiles last night and we even got to enjoy a few little giggles! Today he woke up a beast. He cried most of the morning (we even had to leave church early) but right now he seems to be happy. At the hospital we ran to him whenever he made a little peep and if we were not there a nurse would be right in. Now that we are home he needs to start getting away from the habit. (Especially with the binkey, I refuse to get up ever 2 hours to stick it back in his mouth, we have begun working on him doing all by himself) We are also trying to get hm back on a schedual, Josh and I are way to tired to stay up to midnight trying to get him to sleep.

My dad and brother are here looking for a haircut, I've got to get going!

Maybe today

We are still waiting for the doc to come in and let us know if we can go home today. Peeweee is doing GREAT!! He is getting all his meds PO now (by mouth, not IV) and he is taking them well. I dont remember if I said this in the last post or not, but he is off the sodium, all his levels looked good. He is eating great and peeing (at least after he gets his Lasix). His oxygen saturation is between 95 and 100 and his respiration's have been down too! We are keeping our fingers crossed that today is the day we can leave this place for good! (for all of you wondering, we have liked all of our nurses! ha)

I hope my next post is from home!

All is well

Things are going good here. Peewee is back to normal and even giggled a few times today! The latest x-ray showed his lungs clearing up and they changed his home meds to lasix 3 times a day. He is off the sodium!!! Woo hoo, he hated that stuff. I looks like we will be going home tomorrow sometime!!

I had a much better day today. I tried really hard to stay positive and I think it worked!! My mom came up around 2 and is still here (what a nice mommy i have!) she is even getting dinner for us!! Josh is staying the night with us tonight!! I think Im going to make him get up and feed peewee so I can get some sleep!


I hope you are all enjoying your friday night!

Creeping

We are creeping forward! The cardiologist came in today and said that the x-ray still showed fluid in and around his lungs. She decided to put an IV in and give his Lasix every 8 hours vs. every 6. They are hopeing that this will clear out his lungs and then he can go back to his old routine of every 12 hours. They think treating the fluid will cut down on his resperations too. Im not to confident this will work because they have tried it before. But only time will tell. Im still a little (alright a lot) frustrated with the docs. The WHOLE reason we came up here was because he was dehydrated and I feel like they are not working on figuring out why. I totally understand treating the fluid in his lungs, but I want to know why he is getting dehydrated and still has fluid in his lungs. Is there something we can do at home? Should we try a different diuretic? I feel like she is seeing it in back and while and im looking at the grey area. Are there other things we could be trying? We put a call into the nurse practitioner and hopefully she will come up tomorrow and I can talk to her about our concerns. Am I a worried mom? Do you think im crazy? haha, Im beginning to think i am.

So I have sat in this room all day feeling sorry for our situation, wishing we were at home and that Malachi didn't have to go through all of this. I left to get some water and walked by a room with a little boy named Kevin in it. He has cancer and has been in the hospital for sometime now. He was in his room playing with the child life specialists. He was happy and enjoying every min with his lady friends. I got back to the room and started crying. Here I am with my son who will eventually get over all of "this" one day he will be running in the yard and this will be a distant memory. Kevin on the other hand will have to worry daily about relapsing or even getting a cold that might mean the end of his life. Suddenly what we are going through doesnt seem so bad. There is room after room of patients who have to fight. They don't get a day off or a break. They have to put their head down and charge through. I admire them. I want to be like 10 year old Kevin. Being here has helped me realize that there is always someone who has it worse than Malachi does. I want everyone tonight to think about the millions of children in the world who don't get a day of. Think about their strength and courage and next time you moan about your situation, remember it could always be worse! I am thankful for every min we have spent up here because I have grown from it. We will fight today and get up tomorrow and do it again and again. From this point on Im going to have a good attitude about this and rejoice at every obstacle.

same old

Things are going well here. Peewee just got taken off his iv fluids and they were going to sned us home. The Cardio specialist came in last min and said that they wanted to keep us one more night to moniter him and make sure the same thing doesnt happen again. He had an x-ray and it showed that his lungs were wet (meaning he is retaining water) so they just gave him an extra dose of Lasix's. This is the same thing they did last time and we were up here in less then 24 hours. If this happens again im going to take him to a different hospital and see what they think the issue is. One day all of this will be a distant memory, I wish that day was tomorrow.

To good to be true

Guess what?? We are back at Rush! Nope, Im not kidding. Peewee was admitted and we just recently got into our room. Im not gonna lie, its feels like home. Our NP suggested we bring him into the ER. She was worried that he was dehydrated (he was). So we came up and here we will stay.

I have a theory. Peewee is on Lasiks which gets the extra water out of him so it doesnt build up in his lungs/heart. Well this is the second time peewee has been admitted and given an IV for dehydration. We are at home less than 48 hours when he begins to act up again. My theory is that he is on way to much lasiks which is dehydrating him. I think I might be right on this one! We will be talking with his cardiologist tomorrow morning!!

I am asking you all again to pray! Pray that we get this figured out so we can go home for good!!!

still not "normal"

So I talked to the NP that we have been dealing with throught Malachi's quest to a healthy working heart. I am still concerned abou his behavior. He is sooooooo crabby! He cries after every time he eats. I have to force him (I know it sounds bad) to eat every 3 hours and he usually only takes an ounce. He has had diarreah like you wouldnt believe ( we are on outfit number 4 today). He has been coughing a lot and is still sooo congested. Something just doesn't seem right. She is putting a call into the cardioligist and will be calling me back. Maybe I am overreacting, but I think something may be worng. Ahhh...I just want to be done with all of this and I want a healthy little boy! I will update you all with what the NP says! Pray that we can get this all sorted out and peewee can feel better once again!

Here we go again

We are HOME!!!

A new discovery

Malachi had reflux! The doc said that Malachi has been showing some signs of it for awhile. They are still planning on sending him home today and our pediatrician can follow up on it when we get home. But you know how that goes, I feel like the "maybe tomorrow" line will come out of the next person that walks through our door. Ahhh...One day this will all be over and we will have a HEALTHY little boy! Right??

We are still waiting for the docs. to do rounds and for dr. P to come in and tell us the plan for the day. They just had to put oxygen on him again, his puls ox was reading in the low 80's. It happens when he is in a deep sleep. We are STILL waiting for his cultures for RSV and influenza to come back.

Quick update

Malachi is doing well. We are still waiting to get his culture results back. Dr. P came in and said that everything looked good and that we did the right thing by bringing him in. (I feel good about that) I looks like we will be going home tomorrow if everything goes well tonight. We talked to the nurse about getting a vacuum machine to suck boogers out at home. The bulb syring works, but not great. We are hopeing they will let us "rent" one as it will be better for peewee and his breathing. Thats all the news I have right now. We hope everyone enjoys their sunday!

PS. Thanks for the continued prayers!!

A Wild ride

The story begins early Sat. morning. Peewee decided to get very upset (for no known reason) and he wailed for a good hour. He was coughing and even puked. He was not peeing as much as he should have been (he is on a lot of Lasiks still). I knew something was going on. Josh and I both decided to wait and see. Peewee finally fell asleep and was good most of the day. Around 4 he had another fit and threw up again. He was also VERY stuffy and still coughing. (and he had runny poop since late friday night) We decided to call the Surgon. Josh talked to the surgons nurse and she said that we needed to take him to the ER. He didn't specify which ER so We decided to take him to a hospital in Rockford and figured they could transport him to Rush if need be. We got there and they hurried him back to being a series of test. He tested positive for RSV and influenza A and b. The doc (Dr. Asia, we really liked her) called Dr. P and he said to get him to Rush. Rockford Memorial decided to transposrt him via heliocopter but Rush didn't like that idea. So we took a 2 hour ambulance ride. We got here around 11 last night. His resperations were right around 90. Everything else looked good. They are re-doing some of the labs to make sure. Dr. P should be in around 10 am. We should know more after he checks him out!

We will let you know more later!!

Home

We are home!!! Last night we got to sleep in our own beds, i got my pj's out of my dresser (not a suitcase) and I went to the bathroom in my toliet!! Ahh, it feels great! We got home last night around 5pm. Peewee slept through the entire 2 hour car ride!! Shortly after we got home my mom and dad brought pizza over for dinner and then watched Malachi for us so we could run and get some gerocerys. Peewee has been a fussy boy since 9 last night. We didnt get a ton of sleep, he is still on hispital time and doesnt realize that he no longer has nurses at his beckon call. Ha, hopfully we can get back in to our schedual quickly.

Our 15 day stay at the hospital was good. We got to meet some great nurses (we miss you all!!) and doc. The change we have seen in Malachi in just 2 weeks is amazing. To think that just 15 short days ago his heart was struggling to pump correctly and he was on 5 meds that kept him alive to today where he is only on 2 meds (lasik and sodium) and that his heart works, amazes me!! He is such a trouper and we are so proud of him!

Happy V-day everyone!! We are getting out of the house for a while today and getting lunch with some friends!! We hope your day is filled with love!!

Pictures

He is my Mane Man! ha

He loves his bink!

Trying to stand up after eating.

I LOVE this picture.

Family picture!

Hanging out

His cute little feet.

First feeding with the thickener

daddy and peewee talking.

Looks like we are FINALLY getting out of here!! I will post again after rounds!

A repeat

Not going home today either. The doc said maybe tomorrow, but we have been hearing that since tuesday. Maybe tomorrow will be the day!

A disappointing day

I woke up this moring and packed up most of our stuff at RMH. I was ready to go and looking forward to going home. I got to the hospital and was greeted by many nurses telling me that we were getting to go home. After rounds the nurse came in and said that they made changes to his meds and that possibly tomorrow we could go home. I pretty much broke down. I was so disappointed. Friday this week it will be 3 weeks that we have been here. Im tired physically and emotionally. As great as RMH is, I want to sleep in my own bed in my own house. I want to eat a home cooked meal and relax on my own furniture. I want to have peewee sleep in his own crib and get back to a normal schedule. I want to go to church on sundays and small group. Maybe im being selfish, but for the last 4 months all of my energy has been towards caring for Malachi. Feeding his so he gained weight, giving meds, taking him to appointments, playing with him and trying to keep him from getting sick. The last 14 days I have spent most of my time in the hospital room trying to care for Malachi as much as I can. Don't get me wrong, I LOVE doing it and I wouldn't change it for anything. But I need a break. Just for 1 day. All I want for my b-day, valentines day, Christmas, sweetest day and anniversary is 1 day to myself. A day where I get a massage, breakfast in bed, time to read a book and enjoy time by myself! I think its just one of those days where I am feeling sorry for myself. Tomorrow I will be back to my normal self, I am sure.

We may possibly be going home tomorrow. Im trying not to get my hopes up..we will see.

Wonderful news!!

Well today was a very hard day!! We had a bad nurse, everytime peewee was finally asleep she would come in to get a temp. then leave. Peewee would fall back asleep and she would be back in for a blood pressure. I wanted to Kill her, let the kids sleep and do all vitals at the same time. THEN...he was fussy so i decided to try and feed him, he was almost done eating and she said "oh we have 5 meds to give him" do you think he is going to take the meds with a full tummy? NO WAY, not a chance. THEN i was getting stressed because i had a fussy baby who didnt want to take him meds, but he had to. Finally I said "next time he needs meds lets do it before his feeding" Ahhh, she drove me nuts! Good thing, she left after lunch. The rest of the day went great.

I just got the word...Peewee IS going home tomorrow. The doc was in and he said things looked great and that we could leave!!! I cannot tell you how excited I am. 12 days later I am going to be leaving with a HEALTHY little boy! Praise God for all the amazing work that went on in room 529. The nurses (most of them), the docs and all the other wonderful people we have gotten to know made this experience a great memory. I hope that we were light to those who may not know the Lord and that we touched their heart in some way. I am so thankful that God brought me through some very hard days and that all along his mercy and grace poured over us! We are blessed beyond what we deserve!! I will post more about our stay when we get settled at home and I have regular access to a computer. Please pray that tomorrow goes smoothly and that we can get out of here at a resionable hour!

Ps. We got our pictured taken today! A photographer came up (she volenteers once a week) and took a bunch of pictures of peewee and some of me with him. She is going to take them back to her studio and play with them a little and then send them to me on a disk!! It was a great treat for us and I can't wait to see them!!

Bustin out

Josh and I had a nice time last night. We grabbed a quick dinner at a diner on CLark st. and then walked over to Blue man group. It was a blast. We had great seats (especially for getting them the day of the show). I haven't heard Josh laugh that hard in a long time! It was nice.

We got up here early this morning. Peewee was sound asleep. The doc. was just in and said he looks great and we will be going home this week! He made it sound like tuesday, but I have a feeling wed. or thursday is more realistic! I can't wait to go home to my old routine. I can't write much (breakfast is on the way) but rest asure that Peewee is doing wonderful! We will only be here a few more days, so come visit us!!

Happy Sunday.

TAKE IT OFF!!

The AV line is out!! The CVP line is out. The oxygen is off. The Holter moniter is comming off soon! The IV is out. Our little man looks naked without all of that on! He is having a GREAT day. I got to feed him at 9am and he did amazing!! The doc came in and told us that his lungs are clearing up and that all his levels have been perfect! Today is the last day of the antibiotic and they are cutting back on his Lasik. The also cahnged his blood tests from every 4 hours to every 12 hours. Unfortunatly we will still be here for a few days. They can't release him till they get the results back from his Holter moniter. Since it is sat. and the people who analyze them don't work on weekends, we are stuck here. (not that they would let him out this weekend, but even if they did we wouldnt be able to) The doc. was thinking they wouldnt get the results back till tuesday or wed. Im hoping we will be out by next weekend! More exciting news is that we can finally start putting clothes on peewee!! We went to target last night and got some outfits that wouls work with all his wires. Can't wait to put him in it!

So josh and i are going out tonght! We have decided to go see Blue Man Group. Im excited to get out and enjoy a night with my hubby.

Swallow Study

We just got back from the swallow study. They had me feed him with a varity of different nipples with normal formula. The results did show that he asperated a little. They moved to a nectur consistancy and had me do the same thing. This time he awallowed it all like a champ!! Which means no ng tube and no g-tube!!! (at least for now they have to see how he does on it over the next few days). They also gave him some apple sauce and he did fine with that! We are so happy!! Please continue to pray that his feedings go well!!!

I forgot to write about our exciting visitor on thursday. For those of you that dont know, Malachi has many sibblings. 3 of them (Gwen 18 mo., Raven 3 and Joshua 6). Jennifer is the adoptive mom of Gwen, and Lenora had Raven and Joshua. We have been in contact with Jennifer and Lenora and have tried to meet up a few times, but due to illness we have been unable to. Anyways, Jennifer was at Rush for an appointment and found out we were still here. So she came up! We got to visit with her for a while and we FINALLY got to see pictures of his sibblings! They all look alike. I seriously think they (all 4) are the cutest kids! She kept saying "welcome to the family" and crying. I am so excited to get to know everyone and develop a relationship with both families! And it will be amazing for all the kids to grow up knowing eachother!! This was the start of a life long family and friendship.

An update and pictures

Things are going well here. Its seems like Malachi has been in Sinus rhythm most of the morning and majority of yesterday. The bedside swallow study is going to be at noon today. The specialist is going to come up and feed him and then depending on what they say will determin what furthur evaluations they will need. We are hoping that he wont need any furthur evaluations, but we are ready if they need to. He has been very restless and crying a lot. The nurse is going to see if she can give him adovant. Here are some long overdue pictures from the last week. Ps. Peewee is 7 months old today!! Yeah little man!

Me and peewee. Hes so cute.

Malachi sitting up and talking with daddy.

I get to hold him for the first time after 5 days.

sleeping baby

blood transfusion number 3. In the middle you can see the remaing blood going in.

playing with his friends

I got to feed him for the first time on day 2.

This is a GREAT gift we got from Joshes co-workers. He loves this little bunny.

Our home away from home...RMH!

The incision and drain tube.

The view from the hospital walkway.

Junctional vs. Sinus

Malachi's little heart just can't decide how he wants his heart to beat. He was in a sinus (good heart beat with p-waves) for a few hours and then switched back to junctional. It seems this morning he is in a sinus rhythm again. Pray that he stays there. They are still seeing fluid in his lungs (not good) so they are treating him with 2 antibiotics. He had an okay night. He was pretty fussy for about 2 hours and they couldn't get him settled down. (The nurse actually cahnged patients, he was to much for her to handle...thats our little man lol). They are talking to the docs today about increasing his feeding amount. He still has the NG tube in and will untill the swallow study. We still do not know when that is. It looks like we wont be going home anytime soon. This all leads me to my list of prayer requests. Here is it...

1. pray for the fluid to leave his lungs

2. pray for restful days and nights for Malachi, he needs them to heal.

3. pray for strength for Josh and I, this is the hardest thing we have had to go through, ever!

4. pray for knowledge for all the nurses and doc.

5. pray for a good swallow study result.

6. Pray for finances, our stay will most likely double (we didn't plan for this)

Josh is back at the hospital with me (thanks to all of you at Lakewood who helped him get lesson plans done! we are greatful for you!! Thank you is not enough!) We hope you have a WONDERFUL day. If anyone wants to come visit, you are more than welcome. We are not going anywhere for a while!! We miss you and hope to see you soon!

The last 24 hours from both sides

Josh's Side
Leaving the hospital was very hard. I was able to make back to our house via my in-laws. They graciously offered to give me a lift so I could leave Erin with the car. Upon arriving home (around 9) I did the quick check. However I realized that it was very empty with no Erin, no Pee Wee, and no pups. I went to bed after a series of calls to check on Erin and Malachi. This morning I awoke and went to work and was extremely distracted. However as I was trying to get my desk organized I stumbled upon a stack of get well cards my students had created for Malachi. It was just the lift I needed. I was very encouraged by the overwhelming amount of support I received from my coworkers (thanks guys I know many of you are reading this). During the day I talked to Erin around 9 am or so and found out they put a feeding tube in. My heart hit the floor. I realized that I had to be up there. So after cashing in some favors and calling on some friends at work I had my sub plans for another two days done. I also found out that his heart rhythm was in his normal pattern (at least for a couple hours).I then hopped in the car and drove to see my wife and son. As I was coming to the hospital I found out that Erin was able to hold Malachi! My heart was filled with joy. I realized that when I was walking into the hospital I felt like I was coming back home. It is surprising how quickly you adapt to your new settings. Well I am now back in my "hospital" gear and back in the swing of life in the PICU.

The last 24 hours from both sides.

Erin's Side-
Last night Josh left the hospital around 7:15 pm. My good friend Jamie got up here shortly after Josh left. We were able to visit for a while and meet the new night nurse (she was a nice one). I left peewee for the night around 8. I thought it was best for me to get a good nights rest. I went back to RMH and did some laundry and watched Law and Order SVU. It was a nice break from nurses and the sound of beeping. I got to meet some of the other families that checked into the house. I went to bed fairly early and slept till 6:30am. I got to the hospital around 7:45 am. The nurse (Kathy, another one we like) told me that Malachi had a good night. He did get really fussy and they had to give him a sedative. He was still in an abnormal heart beat pattern, but his heart rate was good. She also told me they had some concerns that he was aspirating while feeding. They had done an x-ray the day before and saw some fluid in his upper right lung. Dr. Hoffman (she is a peds icu cardio specialist and the one responsible for getting peewee through yesterday) decided that she didnt want to risk the chance of illness. She said they were going to do a swallow study and see what is going on while he feeds. She also said the outcome may not be what we want and may require a g-tube. I lost it. Malachi was doing so well! The nurse ended up putting in a NG tube (through his nose to his stomach) in. Again I lost it. He has been through so much and I thought he was finally comming to the end. I am not sure when the swallow study will be, but i will update everyone as soon as i find out. They rest of the day was pretty uneventful. His heart beat got back to normal for a few hours, but i think he recently came out of it. He is trying so hard! I GOT TO HOLD HIM!! The nurse said i could hold him, i was soooo happy! I cried, again. It has almost been a whole week, i missed looking into those brown eyes and having him look back at me. It was wonderful. I held him for about 1 1/2 hours. Josh will get to hold him tomorrow! The min. they laid him in my arms all the bad things over the last day was wipped away! I was reminded that it doesnt matter what he comes home with/on all that matters is that he is home! And for that I am thankful!

no news is no news

No new news here. His hear is still in a strange rythm. The docs dont really know why it is doing this. But he is stable and everything else looks good. The are doing blood work on him like crazy to make sure nothing changes. His heart rate has been right around 116. The meds seem to be helping with that. Im sure we will get more news when the docs do their rounds. I think they are still waiting to hear from the specialist. He actually works with adults but they figured they would give it a shot since their bag of trick is empty. (that is what the nurse said to us ha) The nurse today is good, she knows what she is doing, but she is not very friendly. I hope we get donna back for the next few days, we really liked her! Josh is going back to work for the rest of the week. He doesnt have a ton of days off left and since we don't know what lies ahead we have to be smart with the days off he does have. I was going to sleep here for the next few nights but i realized that i dont sleep in hospitals and since i have to be up here for 3 days alone im going to need my rest. So we have decided that i need to leave at night to get some rest or i will be useless during the day.

We want to thank you from the bottom of our heart for all of your prayers. God is working in the hospital and putting the perfect people around Malachi. This morning we had a pharmacisit sitting outside the room to get meds for him stat. There were 2 of the most amazing doctors i've ever met. He had 5 nurses who were focused on delivering meds. We are amazed and so blessed to be surrounded by such knowledgeable nurses and doctors. Rush is the best and Malachi is in great hands!

what a difference a day makes...again

As I wrote last night yesterday was a fabulous day. Malachi did amazing. We were already to start another great day. However peewee decided there was a change of plans. Josh was woken up this morning by the doc. taking his drain tube out. Things were looking good and we expected to be out of here by the weekend. I got to the hospital around 7:45 this morning. I saw a nurse in the hallway and she said that peewee was active. I though she just meant that he was awake and wiggling around. Boy was I mistaken. When i turned i saw about 15 people in Malachis room and another 20 people standing in the hallway. I didn't see josh anywhere. after a few mins a nurse came up to me and told me what was going on. Apparently his heart rate shot up to over 200 and his heart beat was not normal. They were giving him shocks to see if they could shock it back into a correct pattern. They were also trying to get the rate down. After about an hour the meds started to work and brought the rate back down. They had to put his AV line back in. They had trouble doing that. There was blood everywhere. During all of this they shocked his heart 5 times to get it to beat normal. It didnt work. Everyone has cleared out and things have settled down a bit. His rate is under control but his beat is not. They have a specialist looking at it right now to figure out the next plan. God made malachi a fighter and he is not giving up that easily! So much for going home this week! Please pray for Malachi as our road to recovery just got a lot longer!!

Going GREAT!

Its amazing the change in a child when they have a good nurse(We love Donna)! Our nurse yesterday...not good. Our nurse today...GREAT! Malachi yesterday, not good. Malachi today, GREAT! Peewee had a MUCH better day today! They got the culture results back and there was nothing, meaning no infection! That made everyone VERY happy. They took some more x-rays early this morning to check his bowel, yesterday they thought they saw something fishy but the x-rays today showed it was just poop. They gave him another suppository and bam, we had poop, lots and lots of poop. He felt much better and started acting like himself. He even gave his uncle Mark a few smiles! The nurse today give his Tylenol with codeine which made Malachi a happy camper. He was able to rest and felt good being awake for a while. What a difference a day makes. We are thankful for a great day. Oh and the prayers for pee worked! Thank you!

Tonight I get to sleep at RMH and get a good nights rest. Tonight when I was leaving, I looked a peewee and for the first time i was proud of him. He has been through so much in his short 6 months of life and NEVER complains! He continues to amaze us with his strength and determination. Nothing will hold Malachi back, I am 100% sure of this! I am proud to be his mom and so extremely lucky to call him my son! I can't wait to see what barriers he breaks through, what mountains he climbs, and the depths he goes to, to prove people wrong. The amazing thing is that while he is teaching all of us what it means to love unconditionally, accept others, challenge the norm and enjoy every moment, he will also be teaching us how to be humble. He will not love unconditionally to get noticed, he will not accept others to gain popularity and he will not challenge the norm to become powerful. He will do all these things out of the goodness of his heart and that's a lesson I think we all need to learn! The Lord is using this 11lb. baby to show the greatness of God in EVERY aspect of life and Malachi will live up to the meaning of his name... "His messenger." I am so very proud of my son and I will shout it to the world, dont be afraid of our differences but be open to learning. I think you will be amazed by the outcome!!

not so good news

I have some not so good news. Malachi is constipated. Poor baby. There is some other not so good news, they did a blood test a few hours ago and found out his white blood cell count is up signifying an infection somewhere. They just did a urin culture and saliva culture to check for infection in those areas. They also ordered a x-ray to check for bowel blockage. He also has a small fever of 100.5. I will write more when i get more info!

Progress

They took the foley out but now they are worried because he is not peeing enough. The nurse today (who im not fond of) said very matter of factly that "she will get his peeing under control." Alrighty then nurse. They also tried to ween him off of oxygen last night but his O2 level kept dropping. They want it in the 90-100 range he was in the 70-80 range. Needless to say they has to put it back on. Hopfully this wont hinder his recovery and that the stats will rise. Please pray for pee and oxygen! Other than that he is doing okay. He is awake more and more and letting us know when he wants something. The hard part is that we don't know what he wants and nothing really seems to sooth him. I think he is in pain and that breaks my heart! We are still waiting for the doc to come in today after we talk to him we will have a plan of what can be removed. We are hoping for the chest drain tube and the av line. We still haven't been able to hold him which also breaks my heart when he is crying. Anyone who knows him knows he isnt a cryer but Josh said he had a rough night last night. (Josh stayed and I went to RMH to sleep. Tonight we will switch)

Well the resident docs are making their rounds. I call them the traveling trio. There is one doc. with 2 residents and they go around to each room and talk about the progress of each patient. Its funny to watch. Last night the lady doc came in and listened to his heart for a few mins. Then the other 2 took their turn and they talked about what they heard! Makes me laugh! One of the guys actually went to high school with me and graduated the same year! Small world.

Dr. P just popped in so I have to get going. I will let you know any new updated!