Friday, December 31, 2010

Moving to the PICU

What a roller coaster! We should've expected it because it seems that's how things go with our kids, but Landon was doing great Wednesday, down to 1 liter of o2 but slept most of the day. Overnight Wednesday his o2 saturation kept dropping and a few times really low (40s and 50s again). Needless to say I had only gotten about 1 hr of sleep in the 2 days because of his monitor going off and needing to stimulate him. Being on the general floor, the nurses have quite a few kids so it's hard to for them to give him so much attention. He wasn't really giving much of a fight when they suctioned his nose and wasn't breathing hard enough to trigger the inhalers for breathing treatment so they consulted with PICU and ended up transferring him Thursday about 8am. His heart rate was really low and o2 sats continued to drop. They put him on Si-PAP, which is like CPAP but interactive so it responded differently depending on his breaths but also gives an extra puff of support every so often. This helped open his lungs so he'd get good breaths. Because of his poor condition when he was admitted to PICU, they wanted to get a PICC line (IV that runs through his veins so they can get more accurate heart rate readings & administer meds quickly) and were thinking he needed to be on the ventilator again if he didn't improve quickly. I think that was enough of a threat because he perked up and was more stable. :) It worried us because we kept having flashbacks to the Human Metapnemonia Virus back in January. He deteriorated so quickly and needed a lot more breathing support. After a few hours of Si-PAP he started waking up, being more alert, keeping his saturation and heart rate up so they were pleased. He was able to transfer back to nasal cannula for about 7 hours then Si-PAP again. He rotated between the two overnight too.

Landon when he first got on Si-PAP

Happy, alert, feeling better! I tried to upload a video but it's not working, but he's been hilarious!

So what in the world happened?? His blood cultures grew Strep A Bacteria. This was really concerning because though it's the same bacteria that gives you strep throat, can be fatal in at risk patients (ie Landon with his COPD and using steroids). The Strep bacteria can spread to your lungs, bloodstream and other organs. With his Chronic Lung Disease it's really easy for lung infections to spread to his bloodstream and from there it can access other parts of his body that the blood flow to. Thankfully they caught it early and started him on antibiotics and he's showing positive signs. They started his feeds last night and he did really well so today he's going to get continuous feeds at a slower rate than usual and hopefully tomorrow be back up to his regular feeding schedule tomorrow! We had a really hard time understanding this yesterday when the doctors were telling us. How in the world can strep throat land you to the ICU!?! I did a little research online and understand a lot better. We'll definitely have to keep a really close eye on Landon for awhile with his chronic illness. He's a lot more susceptible to illnesses and they'll affect him a lot worse that a healthy person.

He's in droplet precautions so we have to put on gowns, gloves and masks (Nich should've had his on!)

Since he's in the PICU and great hands, I was able to get into Ronald McDonald house again and got a great night sleep, took a shower and even checked my email! :) I can't even express how thankful we are for this place! It truly is our home away from home. After living on the general hospital floor, not having a place for my things, taking a shower in the community bathroom, eating dry microwave dinners, I really appreciate unpacking my suitcase and sleeping in a bed. When he was going through all of this on the general floor, I was so incredible exhausted. I was emotional and even cried a few times because of how exhausted and stressed I was. But a good night sleep is so helpful! I have a fresh mind to understand what's going on with Landon and his treatment course. When I checked in, the managers knew me, I went right up to a new room (our 3rd out of the possible 29), unpacked my suitcase and got my room together. I met a couple new families that are going through hard things with their babies and we quickly bonded over the stress and worry of our sick kids. We know this world all to well, and I'm so thankful for the support. It's still hard to see Landon go through this and be away from home and family, but the normalcy and support makes it easier. Praying for a healthier, less crazy new year!!

Wednesday, December 29, 2010

Landon's got a bug

I know many of you have been supporting us on Facebook and we appreciate more than you know! It's so great to know so many people are praying for our family!

I just wanted to recap what happened and update you all on how Landon's doing now...He's had a cold for awhile like all of us but yesterday morning he dropped his oxygen saturation to 39%, supposed to be 94-100%). He was blue/grayish and Nich called 911 to send an ambulance. He got a breathing treatment on his way to the hospital, another 2 when he got to Jackson and needed 4 liters of oxygen to maintain good sats. Jackson thought he needed higher level care so transferred him to UM. In the ambulance was able to go down to 1 liter but when we got to UM ER needed 4 again. He had another big drop to 29% in the ER which thankfully the doctor saw. He received 3 more breathing treatments which really help to open his airways and break up the gunk. The rest of the time his saturation was pretty good. But when he holds his breath (BPD spell) he can go down fast! Since he did well for a good couple hours after that he was transferred up to general care rather than the Pediatric ICU. Hooray!

Landon hanging out in the ER, feeling pretty good! He's so precious!

We finally got situated in his new room after midnight and he had a rough night with desats. The respiratory therapist (RT) was in every 2 hours for breathing treatments and nurse was in every hour to do an assessment. Between our visitors and his desats, I got about 15-20 minutes of sleep at time. Landon was pretty restless and he had a couple major drops to 40s-50s that needed stimulation to help him breathe deeper. The morning rounds didn't do so good since he had a rough night and in the morning (like every morning) needed lots of suctioning. They wanted to move him to moderate care so the nurses would have a little more time with him, but there wasn't any room so we gave it a try staying here. He's been an angel! Played for a little bit but mostly catching up on much needed sleep. We've been able to wean his oxygen down to 1.5 liters so we're on our way! Just not telling him :) He's generally on .25 liters at home, .5 with a cold. He's needed blow by oxygen (an open tube near his mouth) because while he sleeps, be breathes through his mouth and isn't getting the benefit of the nasal cannula through the nose. With this set up, his oxygen saturation has been in the high 90s! We're just not telling him! We learned from the NICU :)

Landon's friends helping hold his head and his blow by tube in the right spots! :)

He is a trooper for sure! He's had breathing treatments every 2 hours, 2 IV's placed (the first one went bad this morning), been listened to over and over and when he wakes up (truly wakes up...he's so not a morning person!!) he's smiling, looking around and playing. Thank you all for your prayers, encouragement, support and offers to help! You help us get through this each challenge before us! A friend sent me a verse that I really needed and wanted to share. "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2. He's been taking care of us from the beginning, we don't have to worry! Such encouragement when we feel pretty overwhelmed. God's constantly showing us, He is good and in control!

Monday, December 27, 2010

Finally...hearing test results

And unfortunately not so great...Let me preface this post with a link (click here!) that'll help explain some of the lingo & tests. Dec 23rd we took Landon for his 3rd hearing test at UM and he actually cooperated! That was the great part - they were able to do all the tests that were needed, that he didn't cooperate with in the past. :) He usually breathes too loud, is really fidgety and doesn't respond well to the behavioral response test. He fell asleep midway through the appointment, so the audiologist was able to do both the ABR (Auditory Brainstem Response) and OAE (Otoacoustic Emissions) tests. Neither are painful, but require the baby to be still, which has been the problem. These tests can give pretty concrete results so we were really glad to get them done.

Let me back up...in January, all the babies failed the BEARS test (the general newborn hearing test that all babies have before they leave the hospital), they did follow up tests before each was getting ready for discharge and decided to refer all to Audiology for further testing. Once discharged, Brennan & Brooke passed the ABR & OAE with flying colors. Brooke may have mild hearing loss, but is most likely conductive (fixable!). Landon's BEARS test just before discharge, he PASSED! This surprised everyone especially because his Grade IV brain bleed apparently bled through the auditory pathways (as well as vision). We were referred anyway and since the audiologist hadn't been able to get good results from the ABR & OAE, we've been on a hearing test roller coaster. He's such a hard baby to read too! Trying to decipher if he hears you, sees you or senses you when he reacts, sometimes we've been second guessing.

Well, the results...they were able to complete both tests and feel confident that he has moderate-severe hearing loss in both ears. What a blow...he's been doing so well and we really think he hears (maybe he's REALLY good at selective hearing already) that hearing pretty conclusive results was hard. Moderate-severe hearing loss isn't as bad as it sounds from what I've read and been told. The spectrum of hearing loss goes from Mild, Moderate, Severe, then Profound. He's between Moderate & Severe which means we'll need to speak louder and closer to him and he won't hear quieter sounds (and even Brooke & Brennan crying at night - thankfully!). He also got fitted for hearing aids. All the babies have been followed by ENT (Ear, Nose & Throat/Otolaryngology) which will see if there's any conductive hearing loss that can be fixed through medications or tubes. Before ordering Landon's hearing aids, we'll get another ENT consult and fix anything that's fixable before the strong hearing aids. Looking on the bright side, at least they come in lots of colors!

I looked at a couple website and found lists of risk factors for hearing loss...prematurity (check), ventilation (check), antibiotics that have hearing loss side effects (check), hydrocephalus (check), family history of hearing loss (check - I had 40% hearing loss and had tubes in my ears twice...sorry Landon!), many ear infections & high bilirubin (thankfully no to both), 5 out of 7.

At first we were pretty discouraged, thinking how can he really have that bad of hearing loss! He passed other tests! Landon is such a trooper though. Glasses, oxygen, feeding tube, now hearing aids, quite the list of equipment. He (and we!) have the best support that pray for and encourage us, no matter what the next steps are. He's already getting speech therapy to help work on eating (which he's doing great!), now we'll just have to add another component. God didn't bring him/us so far for us to get discouraged. It's just hard that on top of everything else to be concerned of with their development, hearing loss throws another wrench in his therapy. No matter the odds against and challenges before us, we have seen so many miracles and are so thankful for His constant hand over our family!

Sunday, December 26, 2010

Christmas!!

Wow, where to start?! This Christmas was so much fun! We had a great time with family and thankfully they all came to us this year! Next year will be different, the babies will be stronger and healthier and we can do the traveling. Hailey wanted to plan everything for Santa and the reindeer and the babies, especially Brooklyn, loved opening presents!


Hailey's plate for Santa...I LOVE being Santa!! :) She even put out cucumbers and carrots for the reindeer - Nich took bites of them and I got to eat the cookies! Daycare gave her reindeer food too - oatmeal mixed with glitter! We sprinkled them in the snow around the veggies. Such a cute idea! Since there were only bites of carrots left, she determined reindeer like cucumbers better so that's what we're leaving next year :)

The tree!


Stockings - WOW, we have so many!


Christmas Eve, Grandma & Grandpa Johnson came over and brought a full Christmas dinner and presents! We had so much fun and got great gifts!


Christmas morning with just us! Each kid woke up at a different time so we were able to have Christmas morning one on one. It was great! Hailey first, then Brooke, then Brennan then Landon. Hailey was THRILLED to open her dollhouse! In fact, we didn't see much of her the rest of the day! We debated making the cool present from us or from Santa, but let Santa get the thanks for this one. :) She was so sweet and popped out of her playroom to help each baby open their presents - she's such an awesome big sis!


Later Nana, Papa & Meme came and brought even more! The kids loved it and we had a great time! Finished the night off with pizza and Hailey went back to Flint to hang out with Grandparents. Restful evening (except I got an earache) and low key day today just enjoying each other!

Wednesday, December 15, 2010

Christmas Pictures!

New laptop is and I'm a happy camper! :) Got our Christmas card picture together - it's incredible how much they've changed in a year!

Christmas Card 2009
The babies were 3 months old and fit in the stocking! Hailey at 3 1/2 years old

Christmas Card 2010
The babies are 15 months old and the stockings only fit on their legs! Hailey at 4 1/2 years old. Hailey and I made that snowman last weekend and she picked out the hat - we had a carrot snowman :)

God is good! Look at their growth!! More updates to come - I'm so excited to have a computer again!

Wednesday, December 8, 2010

Sickies

This last weekend our whole family got a big cold - no fun! It'd been going on for a week but got worse...We loaded up on Kleenex, nose suckers, Vicks plug ins & rub and had the humidifier running all night! Nich and I took the babies in to the pediatrician Monday and turns out Landon & Brooklyn have probable bronchitis (he couldn't concretely diagnose them), Brooklyn has another ear infection (number 4!), Brennan's on the edge of getting this and has possible scalp ringworm (referred to Dermatologist). VERY productive Dr appointment at least! It took almost 2 hours to get us through, but thankfully the pedi was very thorough. Antibiotics and refills for all! When we picked up the scripts at the pharmacy we actually carried out a full bag! :) The only that made me feel really bad is the Dr walked in and said "Oh! Have I met you before?" Yes it's been awhile because of having to take time off work, but I felt so bad that our primary doctor doesn't know I'm their MOM! Don't get me wrong, Nich does an incredible job with the kids but I feel bad that I can't be there for them like he can! I want to take care of them and know all about them too! Ughh...any of you doc's out there, take note! :)

*Side note, we'll have sparce blog updates for a little while, hopefully not for too long! Our laptop was on it's last leg and the screen just died. The whole computer works, you just can see it! Photo's will be added as soon as we can! They're getting big!