Saturday, February 28, 2009
Friday, February 27, 2009
The nurses tell us that Alex had a good night and she is tolerating the small changes they've made on the vent. She also had an x-ray this morning that showed some improvement in her lungs. This is great news and gives us Hope she will be off the ventilator in the near future. It's been a long week and we are glad the weekend is almost here!
Thursday, February 26, 2009
I started looking up what the bible had to say about patience and wanted to share what I found. Clearly, patience does not develop overnight in the life of the believer. God’s power and goodness are crucial to the development of patience in His children. Colossians 1:11 tells us that we are strengthened by Him to “great endurance and patience” while James 1:3-4 encourages us to know that trials are His way of perfecting our patience. Our patience is further developed and strengthened by resting in God’s perfect will and timing, even in the face of evil men who “men succeed in their ways, when they carry out their wicked schemes” (Psalms 37:7). Ultimately, our patience is rewarded in the end “because the Lord's coming is near" (James 5:7-8). “The LORD is good to those who wait for Him, To the soul who seeks Him” (Lamentations 3:25).
Alex let us know last night that she is just not quite ready to be weaned off the vent. It's hard to believe but the secretions are not slowing down. It's very typical of RSV and she is still testing positive for it. She does make a little progress everyday which we are so thankful for and we will continue to be patient and put our Hope in God. We appreciate the comments and knowing so many are still checking up on us :)
Wednesday, February 25, 2009
It seems to be a good night. I (Jimmy) have been working long hours and it's good to come in to a calm baby. Nic tells me they've had a pretty good day, and that they're actually changing settings on the vent - with good responses. They may try to do a little test on her tonight to see how she does with the vent off (w/o actually removing it). But she may need to be more awake for that - so we're not exactly getting our hopes up yet.
But any little bit of progress is very exciting for us. The biggest hope for us is that she'll be off the machine soon so we can hold her. If you're a parent, you know how important it is to be able to hold your child close to you. We're patiently waiting for that moment.
In the mean time - if you have a child (of holding age), be sure to take advantage of it. Give him/her a big hug - and say a prayer of thanks.
The nurses try to change her positions throughout the day and she definitley prefers to be on her sides. She was getting a little fussy on her back so we switched her to her right side and she seems to be more cozy and comfortable. I think she would fall asleep if it weren't for the hiccups that are making her mad right now. The PICC placement has been pushed off until 2. Wish we had more of an update but I'm sure this small one will be appreciated :)
Tuesday, February 24, 2009
Daddy is playing with Alex right now letting her suck on the suction tube. It's just like the suction they use when you go to the dentist and she's making all kinds of funny sounds. She slept most of the afternoon and seems to be in better spirits tonight. It's hard to go home without our baby but we all need some rest and have another big day ahead of us tomorrow.
We are grateful for the progress she's made and for the great care she is receiving. We know God is watching over Alex which is comforting and we are staying positive. I think exhaustion is kicking in and we are feeling emotionally drained at the moment. Please keep the prayers coming and know that your comments help to brighten our day :)
Monday, February 23, 2009
We'll keep you posted. Please say a prayer for our little fighter and for her parents. She's been on the vent for a week now and it's been even longer since we've been able to hold her. We are really missing her.
Sunday, February 22, 2009
The nurses have mentioned that they think she may be upside down which is when they have their days and nights confused. Uh oh, not what mommy and daddy wanted to hear. The past couple of days she has not been awake at all when we've been here but they have assured us that they have some tricks up their sleeves to help turn her back around before she goes home.
The docs have started to turn down some of the ventilator settings and she seems to be tolerating that well. She still has a lot of secretions but they are thinning out and breaking up much easier. All of these signs mean she moving in the right direction. God is certainly answering all of your prayers and lifting our family up. Thanks for sharing in the struggles and in the overwhelming joy we are experiencing today :)
Saturday, February 21, 2009
Friday, February 20, 2009
The sucretions just keep coming and we keep sucking. She's awake (sort of) and we've been talking to her and suctioning out her mouth and nose. She tries to suck on the suction tube which is so funny.
Overall, she's had a good afternoon and evening. She had a sponge bath earlier so she smells baby fresh and is tucked cozy into bed. Let's pray for a good night's sleep :)
When I arrived this morn i was so excited to see her eyes open. Not much, but she was awake. So I talked and sang to her, and suctioned the druel out of her mouth (which she seemed to like, since it created a soothing suction in her mouth which she can't get herself w the breathing tube there). This may not seem like much, but it pretty much made my day. She been so snowed lately that it's as if our Alex has been in a coma - not really responsive to anything we do. So this was at least a glimpse of her personality. We really miss her.
Thursday, February 19, 2009
Cat got the lucky phone call from me this morning. This isn't the first time she's gotten a call like this or seen me walk into her office in tears. I've known Cat for almost 2 years, although it seems like much longer, and she's been my rock. I really do believe that God places people in your life for a reason and he knew I would need her to lean on. My life has transitioned and changed so much in the short time I've known Cat. My dad passed away shortly after I met her and about 3 months later I became pregnant with Alex. It was a tough year dealing with the loss of my dad, finding out that our child had spina bifida and helping care for my grandmother who has severe dementia. Cat has been a best friend to me and has been there for me on a daily basis through the difficult times and has helped me to celebrate the good times. Today, after my desperate phone call, she managed to check out a laptop for me at work, get it set up so I could work from the hospital and drive to Children's to drop it off and bring me lunch. That's how amazing she is and I don't know what I'd do without her. I would post a pic of us if I had my computer :) We are so blessed to have so many great friends and a loving family to share life with.
Wednesday, February 18, 2009
Time is moving slowly or maybe we are just getting more and more tired. We are settling into a routine and waiting for Alex to turn the corner. No new updates. She's still sleeping and remains stabilized.
We know a lot of people are praying for Alex and reading the updates and we thank you for that. It would be so encouraging to hear from those who are visiting the blog. Please don't feel pressure to post something profound or feel like you can't post because we don't know you or any other reason you may be hesitant. I guess we are getting a little weary and Alex would love to hear from her fan club :)
I guess the pressure in her lungs is a little higher than it should be - they say that could be due to the sticky mucus not letting her lungs inflate as much as they should. I really don't know the severity if this excess pressure, or what they're going to do - so will just wait.
I did a little redecorating in her room today. Put up some pictures of her when she was in better spirits, just to remind us. It's been almost a week since we've seen her smile.
Tuesday, February 17, 2009
We are heading home to get some rest and hope that our baby girl has a good night.
Jimmy and I have been going home at night to sleep and it's been so quiet without Alex. We still walk by her oxygen tank and pause, just for a moment, because we usually turn it up at night. Same thing with cathing, we do this every 3-4 hours so after a couple of hours being home we still think we need to cath her. I guess you don't stop being a mommy or daddy just because your baby's not at home.
Thanks for all the sweet comments today.
I arrived this morning to the respiratory therapist adjusting Alex's breathing tube. An x-ray indicated that it was not quite in far enough. After adjusting it, Alex is clearly agitated and "feisty" as her nurse Paul describes her when she's mad. They think it's now in too far since she keeps trying to cough and she looks so uncomfortable. They attempt to adjust it again. Her machines are beeping non-stop, her little arms are flailing (as much as they can with restraints), and I'm trying to hold it together.
Paul tells me that some of the cultures came back and she is still positive for RSV and a new one HMPV (Human metapneumovirus) which is basically another really bad respiratory virus or what Paul refers to as RSV on steroids. Her little body has been trying to fight off both of these infections that can take out a typically healthy teenager. She is letting the ventilator breathe for her and as a parent this is painful to see. Paul reassures me that it's like she's riding a bicycle downhill and when she has the energy and strength to start riding uphill, she will start breathing on her own over the ventilator. The tube is finally adjusted and Paul notes that this should keep her out of trouble for a couple of hours.
Please pray for strength for our family and healing for Alex. We are lifted by your prayers and your comments mean the world and really do encourage us when we are feeling down. Thanks for being along side us and for your ongoing support.
Monday, February 16, 2009
She just has entirely too much mucus, and too little energy to fight it. She's sedated, so it certainly doesn't bother her. But we aren't fond of it, although we know it's for the best. The docs say this isn't uncommon for these types of RSV cases - so we're a little reassured.
Mostly, we're exhausted. Will post more later. Keep the prayers coming.
Alex has been sleeping most of the afternoon and the docs have managed to stabilize her. Right after lunch the docs were concerned about her elevated CO2 levels. Basically they do a VBG (venus blood gas) which is a blood draw that measures the levels of oxygen and carbon dioxide in the blood. In other words, they are looking closely at the O2 coming into the body during inhalation and carbon dioxide leaving the body during exhalation. Because her CO2 levels were elevated they switched her to a BiPAP mask that covers both her nose and mouth and aids oxygenation and ventilation, minimizing carbon dioxide rebreathing. They had to rig a mask to fit her face because she just happens to be inbetween sizes but it's seems to be working so far.
Please keep the prayers coming as the situation is still very delicate.
I showed up this morning to find our baby with a CPAP mask on. After a long night of spiking fevers and her oxygen levels dipping this morning, they decided to put a CPAP mask on Alex. CPAP (Continuous Positive Airway Pressure) delivers a stream of compressed air via the nose mask you see in the picture. The nasal cannula she typically has in was no longer enough. Her little arms are restrained because she wants to pull the mask off, but they did give her some sleeping meds that help calm and relax her.
I was only here for 10 minutes when her O2 levels dropped and her nurse had to bag her. About half an hour later, she dropped again and I had to yell down the hallway for help. She wasn't recovering on her own so a doc had to bag her again. It's pretty scary when this happens and as a parent your heart drops and you just go into panic mode. They've stopped her feeds as there is a 50% chance, if the CPAP doesn't improve her condition, she will need to go on a ventilator. Most kids peak at 3-4 days but the docs think the recovery from the surgery has prolonged the RSV and so we may be seeing the worst of it now.
Please say a prayer for Alex today. It's hard for us to see our baby girl so sick. We know ultimately everything is in Gods hands and He is here with us. We appreciate all of the support from family and friends and always look forward to reading your comments :)
Sunday, February 15, 2009
Not much new to post, other than a few pics. Her wheezing def seems to be getting better throughout the day. She's still pretty grumpy - & we haven't been able to get a smile out of her. But we'll keep making monkey noises & let you know when she does.
And here's a pic of her neck where they did the surgery. It's looking pretty good.
But she's still really wheezing, which is why we're still in the PICU. It comes and goes, and the Resp Therapist doesn't know exactly why - other than the RSV. So we're just continuing to hope she gets better on her own.
Saturday, February 14, 2009
Not much new to report. Alex is still in the PICU but will most likely be moved to another floor today. The RSV is kicking her butt the past few days and with the UTI and surgery on top of that, she is worn out. She's also feeling hungry as she hasn't eaten since Wednesday evening. Since she is a nose breather and so congested, she can't seem to breathe and eat at the same time. She's getting what she needs from the IV but her poor little tummy is empty and she's not very happy about that. They plan to put a feeding tube into her stomach today so hopefully she will tolerate her feeds that way.
Keep the prayers coming and as always, we love to hear from you :)
Friday, February 13, 2009
Alex is doing ok, but having some respiratory issues. She's receiving nebulizer treatments and the nurses continue to suction her out which gets her good and "pissed off". She also has another urinary tract infection so they plan to keep her in the PICU for now. She's been in and out of sleep most of the day and the nurses are trying to stay on top of her pain.
On a lighter note, a local radio station (Alice) is doing a radioathon live from the hospital called 36 hours for kids and they brought by a little build-a-bear for Alex that is so cute. Check out her bed head :o
I'll have to post some pics later since I don't have a fancy iphone like daddy (hint, hint sugar daddy). Thanks for all the thoughts and prayers and for being with us on this journey. It means so much to us to have such a strong support system and hear all of your comments.
Thursday, February 12, 2009
Thank you so much for your thoughts & prayers. Just one more example of how powerful and effective they really are.
But the show goes on, we let them do their thing while we went downstairs to get some breakfast. Then we saw Jane (from Neurosurgery - the one who originally ordered the MRI, and pulled all the strings to get it and this surgery scheduled asap) who came to sit with us at our table. Jane is so sweet, we like to think of her as Alex's Aunt Janie. She explained the butts she's had to kick in order to make all this happen, and the importance of this surgery - how it could be the solution to so many of her problems (although it's no guarantee of course). It was much-needed reassurance, and she's so nice that it really put us in a positive mood about the experience.
So now we're waiting, half asleep, for what will likely be a 3-4 hour surgery where they are opening up the base of her skull and making room for the fluid to flow freely.
Thanks to everyone for all the prayers, we sure need them. We'll keep you posted as soon as we hear anything new.
Tuesday, February 10, 2009
On Sunday we decided to take her in to the hospital because she was having some labored breathing. They admitted her & we found out that she has RSV, which is a virus that attacks the respiratory system. It's pretty common and usually misdiagnosed as a cold.
They kept her overnight, and then sent her over for the MRI on Monday evening,and got some pretty shocking results. Apparently she has pretty severe Syringomyelia, which is an accumulation of fluid in the spinal cord due to the area around her brain stem being compressed. This is part of the Chiari malformation which happens as a result of the spine pulling on the brain during early development in utero. For more info, see this page.
Based on this new diagnosis, they've canceled all her other appointments and scheduled her for surgery this Thursday to decompress the area around the brain stem. We're not sure exactly what all that entails, but think it might be something like what's described on this page (although I really don't know where the similarities lie).
So please pray for the little angel, as well as her parents - this looks to be a pretty big week for us all. There's a chance that this surgery (if all goes well) could fix many of the things that have been wrong with her, but it certainly comes with some big risks.
Thanks for staying with us,