2 Brothers Layne

We are coming down the home stretch!! Jonah was successful with his room air challenge today. He was able to maintain his blood oxygen levels adequately today. Although, he was only able to stay in his room. He did well. The doc said he could go home tomorrow if all keeps going well. Monday if we were still uncomfortable tomorrow, and Tuesday at the very latest. So in preparation for Jonah departure from the hospital, we have starting bringing all of his "Stuff" home (i.e. Crocodile walker, toys both from home and acquired). So hopefully tomorrow will be another big day for us!!! Tanya and Jonah playing. Jonah and Tanya talking about Daddy and Mamaw going home for the night. Jonah likes chocolate, or in his words "Lodolade" Mamaw showing Jonah how to play the xylophone using a soda bottle and the rails on his crib. Laughing at the fun it is to make noise with the new musical instrument.

Jonah is doing much better today. He is up and down, standing and sitting, and went for another walk today. The only down side is his diarrhea. It comes unannounced and douses everything around him, including the holder. We challenged him with no oxygen today while on his walk. When he got back to the room, he was unable to maintain his oxygen levels and needed to be put at 1 liter, where he is currently. Tomorrow we will look at weaning on his O2's again.

Jonah is down to 1.5 liters today for his O2 needs. He continues to get better bit by bit. He is becoming more and more challenging to entertain in the Hospital. We finally got to give our smelly boy a shower today. He cried at first but when he realized he was getting a "tubby" he was ok with it. He also went for a walk today in his crocodile walker. He met all sorts of people and was a huge flirt, as usual. He also found the play room. He enjoyed some time on the carpeted area playing with the kitchen. He made cookies for his nurse. He finally took more than a ten minute nap. He slept for 1.5 hours in his bed. What a relief for us to have him feel comfortable enough to sleep. I guess it helps that some one has been by his side for the last couple of days. he still cries when you say, "put you on your bed" or "bye, bye." Although he is getting much better!!!

Today Jonah got to hang out all day with Grandma Raine! He was in heaven. Jonah has been all about eating/tasting today. Last night he got to lick french fries with katchup on them. So today he asked every person that walked into his room for "Tato Fries Please!" One of his Dr.s tried to order some up from the cafeteria but they refused due to the number of complaints they have received in the past of how the fries are cold and greasy by the time they arrive. So Jonah had to wait all day until Daddy could bring him some. Jonah munching on his feeding tube clamp. Jonah's excited face that Grandma is here!!! Daddy hanging out in Jonah's room Jonah suddenly went from 2 liters of oxygen to 3 this morning and Dr. Carr was concerned that he may have a partial lung collapse or maybe more atilectisus. So an X-ray was ordered to see what was going on. It was determined that it was just the atilectisus. Over the course of the day he has been able to go back to 2 liter...

Today Jonah made some great strides of improvement. He was able to decrease his O2s to 1 liter in the PICU and be healthy enough to sustain nebulized breathing treatments every 4 hours. This qualified him to be moved out of the PICU and go back to the Pediatric floor. Which is a huge sigh of relief for us. He is back to his happy self and moving quite a bit. When the doc came in to asses him he said, "I have heard great things about this boy, and I am pleased to see he exceeded all expectations for me." We have some great docs in the pediatric wards at Portsmouth. Now with Jonah on the Peds floor some one can stay with him all the time. He was getting a severe case of being left alone. At the very word of, "Bye" a volcanic eruption of tears and sadness would fill his little body. He resisted sleep enough dark circles began forming under his precious eyes. Eyes that were filled with worry. Knowing that sleep meant the disappearance of mommy and daddy. Gr...

Last nights rest helped, big time!! He needed 10 liters of air last night while sleeping. Today they medical staff was able to wean Jonah down to 2 liters and take him off the heliox. He is doing much better than yesterday!!! The lung doc came and spoke with Tanya. He said that his prediction of a 4-5 day stay in the hospital was incorrect and negated it. He also said that he thought Jonah would be there a couple weeks, and still after he is released it will most likely be one month before he is fully recovered. We learned a couple of things today. One, we grew very over confident in Jonah's abilities and health. Two, Jonah was stronger than he is. We are very concerned about school and what do in the fall. Tanya is fully capable of homeschooling Jonah, but then he looses the socialization that he needs from other kiddos. We have a lot to decide in the next couple months.

Early this morning Jonah spiked a fever, also his left ear started to drain which indicated a ear infection. So around noon they started IV antibiotics to try and get a jump start on an infection. It only took two tries, but they got it. Jonah progressively got worse, he stopped talking, was visibly working very hard to breath, only wanted to be held, and started spiking fevers. The docs were very, VERY, concerned with this and quickly decided Jonah needed more assistance than they could offer. So, to the PICU we came. While in the PICU, Jonah will be on HeO2. Helium and Oxygen, also known as Helox (not sure if the spelling is correct). So far Jonah is responding well to the treatments. After an X-ray, the doc said their is evidence of a pneumonia or Atelectasis (which is when the alveoli are deflated in a specific part of the lung). This is the second part of the post. I am sure people have checked to see how Jonah is doing already, but we have thanks in our heart...

Today we were thanked for bringing Jonah into the hospital by the lung doctor. He said he would have admitted Jonah or Tanya, but one was going to be in the hospital! We had a good laugh. Although the plan for now is not to challenge Jonah the rest of today or over the night. Meaning he will stay at 4.5 liters of O2, and the nebulized breathing treatments every 2 hours. It is a bummer having a corded baby again. I can kind of liken this to a weed eater that is electrical. You always need a longer cord!!! Jonah is still active, which every one is pleased with. One of these days we will remember to bring the camera so every one can see Jonah in the cage. Also, because Jonah is mouth breathing, due to being all stuffed up in his nasal passage, He is wearing a mask instead of a cannula. Tanya was able to get some well deserved rest today. Our ward is awesome!!! Thanks every one for the help. Some one volunteered to fly Loraine out here to help out. She and Tanya worked thing...

So today was a big day for our little family. I went to look for a car today, no luck. The one Tanya wanted, a Mazda 5, was sold yesterday. Now to rethink what car we would like. After I got home, Jonah was not doing well at all. He was up to 1.5 liters for his O2. So to make a long story short, Jonah is in the hospital with Tanya for the night, and we are not sure from there. I came home to get some rest so when I relieve Tanya tomorrow I am firing on all cylinders, then Tanya can come home to get some well deserved and needed rest. The funny thing, When Jonah coughs he sounds like a barking dog. The people that we shared a question with asked, while Jonah was coughing, is there a dog in here? The nurse said, "No, that is the boy next door coughing." We had a good laugh. That is all for today.

Jonah's morning was NOT good. His oxygen needs were going up faster than we could keep up. Thankfully the pulmonologist finally returned my call from Tuesday. He prescribed Jonah a second broncho dilater that is given through his nebulizer and oral steroid to help with the inflammation. So for the next 48 hours we will be doing nebulized treatments every 4 hours with one med and every 6 with the other. We will be short on sleep but it will be ok. Dave was informed yesterday that he may be going to ASF, which we thought was not going to happen. One person that was going was injured and is no longer eligible. Oh well. Maybe we will find another hidden blessing like we did with Dave working nights. Because Dave works night we are able to keep Jonahs nurse. If he worked days we would have lost Jonah's nurse. It is stated that the respite care Jonah is getting is to allow the parent or sponsor to sleep/rest; and because I sleep during the day. . . Jonah is still eligible ...

Today Jonah has been at least a little interested in his toys and playing again! He is still quite ill but he is finally showing signs of improvement!!! Maybe we'll all get some much needed sleep tonight!

So Today was more of the same. Jonah has a nasty croupy cough and has started running a low grade fever. I'm praying for more sleep tonight than last. ...There might not be much to my posts lately but at least it's something!!!

Today has been a day filled with movies and snuggle time. I have thoroughly enjoyed the hours spent today holding my sweet boy as he continues to not feel so great. As much as I hate to see him sick I LOVE how cuddly he is!

So it would seem that Jonah has acquired a bug of some sort. He is coughing and has a stuffy nose. Poor guy! Sure hope he fights this off quickly and gets feeling better.

Today has been a long day... With that said we're headed to bed! Tomorrow is bound to be better!

So today has been a little on the cooler side here in Va Beach. The vegetable garden is growing GREAT! We are so excited. Jonah has been telling everyone his story of his evening with Carla (the neighbor). He says he was a "little scared", then he got to talk to Daddy on the phone and he took deep breaths and then he was brave like Nephi. What a cutie pie!

Today Jonah showed some great progress in learning how to suck from a straw. We purchased a nifty little cup that Jonah's therapist recomended. We've tried it out a few times without much success until today. Jonah took repeated sips from the straw without any assistance! I'll work on getting pictures. This evening I got stranded in Portsmouth (a neighboring city) so Dave knocked on the neighbor's door to see if she might be able to help. She not only volunteered to watch Jonah but also lent Dave her car to come rescue me. Dave and a friend went back to the car this evening and were able to get it home. Hopefully tomorrow in the daylight Dave can get things all sorted out!

Oh how grateful I am for my many blessings, topping the list tonight are my eternal sweetheart whom I would never have survived the last 3 years without. Jonah who is such an example of perseverance, strength, and never ending optimism, my families who are such a strength and support to me even being at such a great distance, and a loving Heavenly Father who has and continues to carry me when I no longer have the strength! How very blessed I am!!!

Daddy and Jonah had a wonderful time playing in the water bin this morning. Jonah was in heaven having Daddy along to play and laugh with. The fact that these two match so well was not coordinated. I didn't realize that Daddy had to dress in his PT uniform to weigh in before work today and before Daddy was ever out of bed I had Jonah all dressed!

Jonah and I had a delightfully busy day at home. We made Easter rice crispies (made with GF rice Chex). Jonah enjoyed playing in the yellow colored batch. He even enjoyed licking the sweet treat while it was stuck to his hand! The highlight of Jonah's day today was most definitely getting to play in this tote of water. We had 80 degree weather today and as such the cool water felt perfect! By the time mommy decided water time was over Jonah was totally drenched! You can see in the background that our raddishes are growing like weeds!!! Jonah has requested to play in the water with Daddy tomorrow, hopefully the weather will allow!

Daddy and Jonah had great success today. Jonah attended all 3 hours of church for the first time. Daddy says that he was a champ until the last 10 minutes when he was just too tired to care.

Yesterday was great. I went to the temple. When I came home Tanya looked frazzled so Jonah and I went for a drive to give mom some time to relax. We found some lakes and ponds we could visit for fishing, drove a long the a big river, and then found our way back home. We found mom in better spirits then when we left. Today, first thing Jonah wanted was to visit the patio. So we spent a couple hours on the patio watching the garden grow. The sun was out, the temperature is about 65 and not a cloud in the sky!!!! Dave and Jonah decided to challenge church all by themselves so mommy can get some rest. Stay tuned to see how this one pans out. these are our radishes that have decided to pop up already!! our tomato plant. Jonah and mommy. Jonah in the pillow chair. He calls it a pillow because it looks like a pillow he has in the house. They both are orange.

today was a slow day. Jonah was on a screaming kick today. Almost unbearable. We started calling him a banshee. He even started to say it also. One of our friends gave us a blue ray player. We also decided to update our tv. The old tv and the blue ray player combination gave us a headache to watch. Tomorrow Dave goes to the temple with the youth in D.C.

Today has been loads of fun. The weather has been beautiful and near 80. We played outside and enjoyed the swings at the park. Jonah has thoroughly enjoyed having Gaga and Grandma here. He'll be a sad boy tomorrow when he wakes up and they are gone. We tried to explain this to him but I'm pretty sure it didn't make much sense to him.

Here are the pictures from the hospital! Daddy and Jonah walking down the hall to the surgery center. Jonah showing off his Clown Jammies. Helping Grandma read her book. Post surgery in the recovery chair. He had an IV in his foot. Today has been a beautiful day with lost of sunshine, the perfect weather to garden. We finally got our veggie garden planted. We are using a combination of pots, planter box, and a corner of the yard. The yard is 90% weeds 10 % grass so it didn't break my heart to steal a corner for some veggies. The corner we set claim to. Getting ready to plant some seeds in the box! Jonah went outside with Ms. Erin to explore the yard and pick the flowers. What a cutie pie! Jonah is doing better and better in his Crocodile walker!

Today was a wonderful day. We woke up early to stop Jonah's feeding and give meds so Jonah wouldn't have to go without food for to long today. Surgery went very well for Jonah and all the worrying and stress were relieved as soon as the doc said we could go home about an hour or so after Jonah came out of surgery. Jonah had a difficult time coming out of the anesthesia requiring a little oxygen, but recovered quickly. With tubes in his ears, we can definitely tell he hears more clearly. He has jumped a few times at noises he normally hears many times during the day. Jonah loves to play the piano, but it was too loud for him today. It may take awhile for him to adjust to the new level of hearing. He also was given a hearing test while sedated. His left ear is perfect!! He does have a mild loss of hearing in his right ear. The doc's are not concerned because of how well his left ear is, which will not impede the speech learning process. We took pictures, but I am ...

Today has been a day of laundry, cleaning floors, and cooking. Jonah has enjoyed teasing Gaga and getting passed around upon request. At times he seems to not know what to do with so many beloved adults in our house all at once! So tomorrow is the big day, Jonah will be intibated and sedated again for the first time post NICU. We are feeling a little nervous about the whole ordeal because things like this in the past have been a pretty big deal. We are hoping and praying that tomorrow is extremely boring and that the huge increase in strength he shows on the outside has also developed on the inside!

Today was a lot of fun. We hit the beach for a couple of hours today. Jonah enjoyed knocking over a tower of sand that was made from a bucket. We had fun picking up sea shells, and then came home to watch conference on the internet. A very enjoyable day!!!

Today we traveled to Historic Jamestown, the first successful British Colony in America. It is located 1 hour north of our house. This is the fountain in the courtyard in front of the building. The pot behind Daddy was used for laundry. This is located inside the James Fort encampment. Part of the fortifications were cannons at each end of the fort. Jonah wearing one of the authentic helmets worn at the time. Boy was it heavy! This was our second stop of the day... Yorktown. This is were the last battle of the Revolutionary War was fought. This was part of the display at the military encampment. This was a form of punishment for lots of things, insubordination being one. The soldier was made to sit atop this wooden horse (who's back, by the way, is a perfect ninety degree angle) with weights tied to his ankles while wearing a sigh to explain his crimes. OUCH! Here is Jonah's highlight to the trip thus far... The first words out of his mouth were "On (while rubbin...

So Gaga and Mamaw made it safe and sound. Jonah was shocked to see them in person this morning! It took him a little while to warm up but since that point there is no going back. Jonah has been held and toted around more today than he has been since he learned to crawl and he is in HEAVEN! One of the highlights of Jonah's day was when grandma sat on the floor and allowed Jonah to help her blow dry her hair!!! He has asked numerous times if he can help her again. I have a video of the whole event that I'll post tomorrow!