Saturday, November 15, 2008

Here is our update . . .

I know, I know, I am way behind on my posts. After Justin got home last Sunday we have spent the past week trying to recover. I will give a quick update on the whole family!

Justin: doing good! Of course we are watching him very close and analyzing every little symptom. He has had some congestion with mild cough, not sure if this is left over from the first virus, or something new. He has to stay home most of the time. No crowds, and no sick people are allowed to visit. We are trying to keep the other kids out of his face as much as possible, especially since they can't seem to stay healthy! He has not had any alarms this week, except for one apnea alarm today. Nana was keeping him when it happened. He was asleep, but we are hoping maybe it was a false alarm. I plan to get a monitor download this week, so we will find out then. Justin has his 2 month check up on Wednesday!


This picture was of him getting a bath while in the hospital. He had an IV in his head so we put this little hat on him to help it stay in place. This was on Friday night before he went home on Sunday. You can see that he was feeling sooo much better!

Jase: getting into more and more trouble every day! My sweet, quiet little boy has turned into an active, almost 2 yr old tantrum throwing boy. His favorite thing to do is climb on top of the kitchen table while I am feeding Justin. He also has learned how to climb the baby gates I have all over the house. I'll be feeding Justin and all of a sudden I will hear little feet running around upstairs! Of course, he is usually just going to his room to get his paci and "ki-ki" (his silkie). And he has started the fall in the floor, screaming thing. It's really hard not to laugh! I want to get his "mean" look in a picture. He gives that look when he is getting in trouble, or when he just doesn't know what else to do. It is too funny!


Jase and Mommy!! He was making his "cheeeeeeessssseee" face. I can't even get the camera out of the bag without him making this face!
Jessi: had a great birthday! She had a lot of fun at her party with all her friends. Most of her presents were either princess/barbie or horses, which she loves!!!! She is getting sick again. She seems to keep a yucky nose the whole winter. She will be going for her 5 yr check up on Wed (same day as Justin) so we will see what the doctor says she needs. She is doing great in school. She loves to learn. The other day she wrote her numbers from 1 to 100 all by herself. She knows all her sight words from school and loves to write her letters. She is a sweet little girl and loves her family!


Jessi and Nana. We're still not sure who Jessi looks like. Any ideas?
Jonathan: is sick right now. He had a fever of 102 today and is complaining of a sore throat. He said he thinks he has "strap throat". I figure we will be going to the doctor on Monday. He just finished his soccer season and had his party today. The party was at a park and it was freezing!! We only stayed for about 45 minutes. Jonathan is doing great in school. He is reading more and more every day. He loves that he can sit down and read a book by himself. He got straight A's on his report card and made the honor roll. I had a hard time explaining to him what that was. He didn't understand how he was "on" the honor roll. When he found out it was just a list of names out in the hallway he was not impressed. He is a great big brother and loves his family!

Jonathan and Alex at Jessi's party.
Nate and I just do our best to keep up! I wish we had as much energy as the kids! We are so blessed! Now, we just have to keep the youngest Arwood out of the hospital.

Saturday, November 8, 2008

Great day for Justin

I am back at the hospital after being gone last night and today for Jessi's party. Justin is doing great! He has been off the oxygen since 8:30 this morning! He had 2 low heart rate alarms early on but nothing since then. He stayed with Nana and slept good and ate really good. Then Granna came to stay for a while and he did the same for her. I am hoping he will sleep good tonight for mommy, and behave so we can get out of here! His IV did come out today so instead of trying to restart it the doctor ordered Rocephin shots for today and tomorrow. If all goes well we should be headed home tomorrow around 5 pm!! I am very excited, and I know if Justin could talk he would agree!

Now we just have to see how the next few months go. The doctor recommended that we not take Justin to any public places for at least a month. This includes shopping places and church. I also have to turn into a paranoid, germaphobic mom and say that no one who is sick is allowed to visit the house. I will also be standing guard over Justin with a bottle of hand sanitizer for anyone who wants to touch him. I know, it may sound excessive, but watch your baby stop breathing and struggle to take a breath and then we'll talk. I have never been one to sit at home, I like to get out of the house, but I guess I will have to adjust. The cold/flu/RSV season isn't really that long, right? Oh, who am I kidding? It's going to be a long boring winter. But I will gladly do it for my little Justin, it's a small price to pay.

Thanks to everyone that has been praying for Justin, again. Nate and I joked that he is such a dramatic little guy! I hope he's not one of those that whenever he doesn't get his way he holds his breath. We figure he is already competing with his big brother Jase. I can just hear him saying "Oh yeah, so you had 2 surgeries, well I stopped breathing. I can cause more problems than you can." Hopefully my two youngest will find something else to compete over as they get older. I'm thinking soccer or baseball is sounding good. Anyway, I know Justin has been on so many prayer lists all over the country since he has been born. I wish I could thank everyone personally, it just means so much to know that people care enough to offer up a prayer. I have no doubt that we have experienced the grace of God over the last 8 weeks, and pray that He continues to give us and Justin His covering and grace to get through the rest of the winter with no more illness. Thanks again! We love you all!

Friday, November 7, 2008

Not much change

I don't have any real new info to post on Justin today. He is still on oxygen. We tried a trial last night of taking him off the O2, and he didn't cooperate. He started threatening to have some true apnea spells by taking 10 - 15 sec pauses in breathing. His O2 sats, which stayed at 100% while on oxygen, began dipping in the 80's. So, back on the oxygen. Doctor said his body is just not ready yet to go without the oxygen, and we can't force him. Little Justin gets to call the shots, and right now he is saying he wants oxygen! So, oxygen he gets and mommy gets to stay at the hospital longer!

Tonight I am going home for some much needed sleep. Nana Sue is coming to stay with Justin through the night and Granna will come tomorrow to stay while I have Jessi's birthday party at Jump for Joey. I'll be back to my little man tomorrow night and hopefully he will be without the extra oxygen and behaving himself. Right now he wants to eat, so I will update tomorrow!

Keep Justin in your prayers!

Trying to wean off of oxygen . . .

Justin had a pretty good day. Right now it is 1 am and we are trying a trial of him being off the oxygen. So far he is not cooperating. Within about 20 min of turning it off he started having long pauses in his breathing and his oxygen sats were dropping to around 84 - 85 %. So, we are giving him another 30 min or so to see if he will level out, but the doctor orders say that he has to maintain his oxygen sats above 92% so I think he will be going back on the oxygen soon. Maybe we will try again tomorrow when I'm not trying to sleep and the alarm is going off every few minutes. We also had trouble with his IV again tonight, but were finally able to get the midnight dose of antibiotics to work. If this IV goes out they are thinking about doing a PICC line, but I am really praying that we can either hold on to this IV or maybe find another vein that will work for just a few more days. I just feel like a PICC line is a little to invasive for just a few more days of antibiotics. I'll update again tomorrow, or today since it is technically already tomorrow. Sigh . . . I have got to get some sleep, I'm not making any sense!

Happy Birthday Jessi Sue!!!



My baby girl turned 5!!! I can't believe she is 5 yrs old now. I remember when she was born, and the first thing I noticed was that cute little dimple in her cheek. She is the sweetest girl and loves to be mommy's helper and daddy's princess. She has no problem being the princess in a family full of boys and she also has no problem keeping them in line. I think Jonathan is actually scared of her! I posted a few pics of my favorite little girl in the world. She gets more beautiful every day! I dread her teen years. We have already told her she can't leave the house until she is 30, so I figure I have a good 25 yrs of her being my sweet baby girl!
Happy Birthday Princess, We love you!!!!

Wednesday, November 5, 2008

Justin's Daily Update

Time for another update! Today Justin was moved to a room in the acute care unit. Basically that is a unit in between the ICU and the regular floor. He is still on oxygen with the high flow and is maintaining his oxygen well. He is on antibiotics and will be until Sunday night. The doctor said that the original lab work was suspicious for a bacterial infection and he responded so well to the antibiotics that she "doesn't have the guts" to take him off the antibiotics until at least a 7 day course is completed. He seems more alert today and doesn't seem to be as uncomfortable as he was before. We will soon start weaning off the oxygen and he will have to be off oxygen for 48 hrs with no apnea or drop in heart rate before he can go home. So little man, you have a lot of work to do!! He is eating well, and hopefully we can get back to breastfeeding in the next day or so. He was just too tired out earlier on to be able to breastfeed.

So, all in all, he is doing well. Now it is just a time thing to see how things progress. At the earliest we are looking at Monday for discharge, and that is if he behaves himself!! Come on Justin, I know you can do it!!

Here are a couple of pics. Even with the tubes/IV he is still sooo cute!
That is his IV in his head. Hopefully that one will hold up for a while, he doesn't have any good veins left!

Tuesday, November 4, 2008

Still in ICU

Justin is still in ICU. He had a decent night, only a couple of short apneas/ low heart rates with a decrease in oxygen saturation. They had to increase the oxygen flow late yesterday afternoon because his oxygen level kept dropping. Once he stops having these spells while on the oxygen then he will be moved to a regular room to start the process of trying to wean him off the high flow oxygen. This process could take around 5 days, sometimes as much as a week. At least a regular room will be a little more private and comfortable for me.

I will update more later!

Monday, November 3, 2008

Here we are again

I should be posting pics of Halloween, but no, I am posting about Justin being in the hospital. I think he just likes having his own nurse taking care of his every need 24 hrs a day! I tried to explain to him that he has that at home, but I guess he likes it better here. I'll try to make a long story short. It started Friday night when he wouldn't take but 1 oz of his normal 4 oz bottle. Didn't think too much of it. Around 2:45 Sat morn he had the first of 4 apnea alarms over the next 4 hrs. We got a monitor download that confirmed they were real events and headed out the door to the doctor. He was diagnosed with a cold and we were instructed to "wait and see" if he got worse. From 11:40 on Saturday afternoon until 8:30 am on Sunday he got worse. After a night of no sleep and watching his every breath, or lack of breath, I called in to get another monitor download. This showed 27 true events, most of them apnea that lead to low heart rate. The longest spell was no breathing for 27 seconds. Yes, 27 seconds, try to hold your breath for 27 secs to get a clear picture of exactly how long that is! (Thank God he is on this monitor) This time we packed up, made a few calls for childcare and headed out the door to the ER at Scottish Rite. We were taken straight back to a room (they don't let babies who stop breathing sit in the waiting room) and saw a doctor in about 10 minutes. We were told he would be admitted and he was in a room by 3:45. He had 5 alarms while were were in the ER and he wasn't in his room long before he started to act up. About 10 minutes after being in his room his nurse witnessed one of the apnea spells where his heart rate dropped and he struggled to come out of it. He had really started struggling and having this strange cough sound when trying to take a breath. So the nurse called the Rapid Response Team, which includes respiratory tech and an ICU nurse along with the doctor. The decision was made that he needed to be in the ICU so he had more individual care and the set up for an emergency. We were in the ICU room by 6:30 and he got all hooked up and on oxygen. We were warned that if the oxygen didn't decrease the number of apneas, that he would have to be placed on a ventilator. Not what any parent wants to hear, even if it is the best option at the time. So, thanks to a lot of prayers, the oxygen did the trick, at least for now. He had a decent night but seems to not be responding quite as well this morning. They have had to up the oxygen flow in the last hour because he isn't maintaining his oxygen level. Doctor said to plan on being here at least 4-5 days, and more likely until next weekend. He is being test for all kinds of respiratory viruses and for pertussis. I won't get started on that, most of you know I am very pro-vaccination. I've seen babies with pertussis, one in particular that I will never be able to get out of my mind. I don't know how quickly the cough progresses with pertussis, I will have to do some research. They are actually recommending that parents get a pertussis booster. I may look into that for Nate and I. Hopefully pertussis is not what Justin has but just the thought has renewed my pro-vaccine campaign!

So for now we are here at Scottish Rite and plan to be here all week. I will be staying with him most of the time, although I may have to switch out with someone for at least one night. I need to get at least a little sleep! I know moms require little to no sleep, but I think I may even be pushing the limit of that! I will definitely be going home for a little while on Thursday because it is Jessi's birthday!! My baby girl is going to be 5 yrs old. I will also be going home some on Saturday because she has a birthday party with 20 of her closest friends planned. So this week may be crazy but we have lots of family helping and we'll just take it a day at a time. Keep Justin in your prayers. We are praying for a quick recovery and that he doesn't get any worse before he gets better.