Saturday 10-31

All of Matthew's physicians rounded early today, so I can give you an early update. Matthew had a pretty good day yesterday and a peaceful night last night. He did spike a fever last night and one again this morning, so they are going to draw blood cultures. His white count is elevated now too, so this is also an indicator that he has an infection of some sort (I'm guessing a pneumonia, due to when he extubated himself on Thursday). He is on antibiotics and they are giving him Motrin to control the fever.

Matthew's neurologist feels that we can start to wean his sedative today. They have already turned it down 1/3 of the way and we are seeing his little personality come back a bit. He is opening his eyes ever so slightly when we talk to him and looking our direction. He is also trying very hard to lift both of his arms towards his face. (His nurse thinks he'll pull the tube himself before we pull it for him...she convinced he's a strong little dude). He even tried to give daddy a quick little smile.

The intensivist and his entourage (or according to my friend Michelle, a whole pester of doctors...) came and other than the blood cultures and weaning his sedation, they had nothing new to say.

So we are hoping that he will tolerate the sedation being weaned as this sedation had been keeping his seizures at bay. They do believe his other seizure medication (the new ones and the old ones) are up to adequate levels to help him. We are also praying the blood cultures come back negative and the antibiotic he is on helps whatever his body is trying to fight.

A song that touched my heart today

I have never heard this song before. I heart it today as I was sitting here next to Matthew. I felt God especially speaking to both of us through this. I think I will play it often today. If you are looking for my update for today, it is below.

Just another day in the PICU

Matthew slept well last night. This mamma did too, relatively speaking. Around 5 pm last night Matthew starting coughing really hard and he coughed the tube out and vomited all in one fell swoop. There were a few long minutes of organized chaos around his bed; especially since we had just "fed" him his first meal in his G-button but an hour earlier. There was alot of formula in his tube and the concern is that he may have aspirated some of his formula. That would not be good for Matthew. They don't know if he extubated (coughed the tube out) first or vomited first. If he did aspirate, that puts Matthew at high risk for pneumonia. Everything that have been suctioning from his tube today has been clear; so that gives us some hope; but he is running a bit of a temperature now. I'm guessing when they do rounds this afternoon they will order lab work to check and see if he is getting a pneumonia.

While he was extubated last night (for a total of about an hour) they had shut off his sedation medication. While that was off he had 2 short seizures. With that in mind the neurologist believes that that is our sign to keep him sedated and intubated till tomorrow. That will give us one more day to get his levels of all his medications to a level that will keep the seizures at bay. I am comfortable with this plan. Tomorrow we will begin the process. The nurses and doctors continue to reassure me that his lungs look very good, his ventilator settings are the lowest they can possibly run them on, and he is only on the ventilator to protect his airway. I need this reassurance; especially at night. I seem to have more anxiety with the ventilator late at night.

Also on the list of things to do today are to possibly get Matthew a PICC line which is an IV that would give us longer and better access than an IV. His IV will need to restarted soon, as they don't last long. PICC lines last a long time; he can be sent home with it if needed; and the added bonus is that they will be able to draw blood out of it, so he won't have to be poked anymore for blood draws. I'm guessing they will decide this on rounds.

I will do my best to update 1 more time at the top of this post this evening. My dad is here and my mom is driving here as we speak. Food is beginning to show up at our home too, I am told. Thank you; everyone, thank you for supporting us in your thoughts, prayers, messages, daycare, food, and everything else that I can't think of at this minute. Our family wants you to know we are so thankful, and blessed by your outpouring of love. I can't and never will be able to say thank you enough.

Some have asked if I would like company. I would love company, however, the hospital is locked down similar to Alcatraz due to HIN1 and they are making no exceptions. They are only allowing parents and grandparents to visit. So thank you, but at this point with all the illnesses floating around, I am comfortable with my computer, radio and my cell phone.

I do have a favor to ask of you today. I love getting messages and bible verses sent to me; so if you have the time today and have a special bible verse or just want to send me a quick hello via facebook or my comment section...it's my favorite thing to do, reading all of your comments and verses. In the evening when my anxiety is higher, the verses are nice for me to have and read.

And I have one more favor. Would you pray for Thomas?? Thomas is Matthew's neighbor in the PICU. He is 5 1/2 months and suffers from a heart condition, and seizures so bad they have caused brain damage along with other things. Thomas' mom and I were talking last night and they are not talking about "when" he gets out of the PICU, but more "if he makes it out" of the PICU. It is a very quick reminder of people who are in harder circumstances than us. It breaks my heart.

A new day

I apologize to all of you for such a late update. I wanted to wait until all the doctors rounded so that I had facts for all of you. Matthew is still in serious but stable condition. He is still intubated and they have him sedated so that his brain can have a rest from the seizures and his body too. I slept very little last night as the two of us (Steve and I) shared a bed the equivelent of a large bench. I was very concerned last night and this morning of his pulmonary status and worried he would get pneumonia again. Ventilators and ICU are not my terrritory or area of expertise and when it's your own baby, it makes it worse. It's a case of knowing just enough to be dangerous and letting your mind wander. In this case sometimes ignorance is bliss. Matthew slept well last night and his nurse was amazing with us. She explained everything to me, in a way both of us could understand..she didn't take for granted that I was a nurse, and taught me just as she would teach any other mother. Last night, I appreciated that more than anything.

This morning, after much praying, many tears, and talking with the intensivist (they are the doc's that work in the ICU) to understand more; I am at peace. I am at peace with what is going on am less fear filled. Here is what we understand

• Matthew's lung status is good. He has no signs of infection, and he works hard to cough his secretions. He is still doing much of the work of breathing on his own.
• They will keep him sedated 24-36 more hours to give his brain and body time to rest, before talking about weaning him off of sedation.
• After lots of communication with Minnesota; the doctors here are following the lead of the Minnesota doctors. They have done another EEG, which shows no seizure activity (!!) and are starting him on a slew of meds. While the epileptologist and I are both not excited about this; he feels this is temporary and we will wean off of some when we feel he is well.

We hope all of these things work as planned and we get our Matthew back soon. He is very puffy right now, but peaceful and resting. We will most likely be here through the weekend, but we are in good hands. If things don't go as planned and he is stable; we may talk about transferring to Minnesota for more extensive seizure evaluation.

Again, I can't tell you all enough how much your kind words, texts and messages mean to me. You all are ministering to me in a way that I could have never imagined. I am in awe and it brings me to tears to think of all the amazing people in our lives who care so much. Even complete strangers are praying for Matthew. You all are amazing. We love you all so much. You have lifted my spirits and held me up. Thank you for lifting Matthew, me and our family up to God. I am reminded of the awesome God we serve! Thank you, Thank you, Thank you!!

October 28th

Midnight update:
I'm off to bed. Matthew is in critical but stable condition. He is sedated and the ventilator is breathing comfortably for him. I still have lots of adreniline, but I can also hardly keep my eyes open. This is new territory for me; someplace I never wish to visit again. Thank you, SERIOUSLY, THANK YOU to everyone who is praying for Matthew; and for all the kind words and texts. I'm not very good on the phone yet, but I can text and type okay with out crying (too much). You have lifted my spirits, calmed my soul and I even giggled once. Matthew is a fighter and he has a big God who loves him, and an unbelievable amount of people who love him and are praying faithfully for him.

KEEP fighting Matthew!!
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11:15 pm update

Matthew "crumped" very quickly shortly after I updated. He was quickly (VERY QUICKLY) escorted to the PICU and intubated and on the ventilator now. Steve is here. We are praying for our sweet boy; but we are scared. Please continue to pray. ♥
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9:30 update:
Doc just left Matthew's bedside to talk to nurses in PICU. Looking to get a room for him. Talking about some hard things. Steve is coming.
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8:30 pm update:
I feel like we are going from bad to worse. I don't want to worry any unduly and sometimes I worry that I'm overexagerating, I'm trying very hard not to. But my nurse/mommy gut says things aren't going well. If I had to guess, I would say that we will either have to transfer to ICU tonight, or we may be headed to Minnesota sooner than planned, if things do not change. Matthew is very puffy, he is not managing his secretions well, and his oxygen levels are not staying where they should be. The nurses are suctioning his throat and mouth frequently. They got out the ambu bag and put it in his bed (This would breathe for him if he was unable to). Though he is very sedated, his seizures are continually getting closer together. We have 2 doc's and 2 nurses at/around his bedside and in his room. I'm now starting to officially worry.
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4:45 update:

Talked with Dr. Doesher. He is happy with all we have done. He wants to give the current plan one more night. He says that if he is still as bad in the morning he will consider transport tomorrow evening or Friday morning. He does not want to do the ketogenic diet for Matthew due to the fact that he is currently on depakote and that makes the diet higher risk, and also because Matthew has a kidney malformation. So we will see how the night goes. Matthew is still very sedated from all of the medication they have given him, and Dr. Doesher was suprised that he was not on the ventilator due to all the medications we had given him.
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2:45 update:
EEG was done today. Almost all of the twitching events we are seeing are seizure activity :(. Which is bad since this started Thursday, and we thought these were the same thing he was doing in July. But we know now that they aren't. And he is still having these events even though he has SO much medication on board So the doc's have talked to us and given us three options
1) Fly to MN and have them evaluate him and start his plan of action. 2) Give the new meds some time to see if they help 3) start the ketogenic diet. (a high fat, high protien, low carb diet that can help children with difficult to control seizures obtain seizure control. Results with this diet vary widely. Some have great results. Some not so much.)
Right now I have a call out the MN. I trust Dr. Doesher immensely. I want to conference with him. I want to see what he thinks is best, to see if he has a bed for Matthew and if he thinks that being up there would help us sort this out (I think so, they always seem to get answers fast for us). I value his input and once we have his opinion, Steve and I will make a decision. I hope we can make this decision before today ends.

Thank you for praying!! We know the Master Physician is keeping Matthew ever in his care and are praying for him to guide the earthly doctors to make wise decisions in Matthew's care. I will update again if/when I have more information.

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Original post

I updated my original post yesterday with what happened last night. I am going to use 1 post per day and just update at the top as I go along. This morning neurology has come through and Matthew will have an EEG today (this morning). We discussed medication options, and discussed the possibility of going to MN if Matthew continues to be a difficult case. He is not having large seizures, but having 90 second twitching episodes that happen every 5-10 minutes. We are unsure at this time if they are seizures, because Matthew likes to be difficult like that. In the past we have seen things that look like seizures, but are not seizures on EEG. Soo, an EEG will give us more information. I will try to update later today if/when I know more. Thanks for praying!!

ER stay number 6229

Updated: @ midnight
I think I will post everything for one day on one post and just update on the top as the day progresses.

Not much new, other than we are in a room in the step-down ICU. He is still having these "twitching" episodes that last 1-2 minutes that we are unsure if they are seizures, but no long seizures. During these "twitching episodes" he will cry for painful stimuli (read: pinching) but doesn't move his eyes or respond any other way to you. During the longer episodes, he is not responsive to pain. So who knows what is really going on. They have him on a whole slew of medications right now. The attending doctor told us that the amount of medication they had given to Matthew to stop his seizures would have put any other kid his age on a ventilator. That's scary to me. But Matthew is a fighter, and he didn't even fall asleep, much less forget how to breathe :). He was even flirting with his nurse after she gave him all that medication. He was giving her smiles and "talking" to her.
I will say again, as I have said in the past when he has issues with seizures; that neurology care here in our great state is sub-par. The neurologist has YET to come see us, but has given orders by phone. No orders for an EEG though, which to me is ultimately frustrating. That would be the first thing I would do. But EEG's are not easy to come by in this hospital, and they must be scheduled and done between the hours of 9 and 4. That is probably my greatest irritation. This is the same doctor that,yesterday, when we were in our local ER for a grand mal seizure that lasted 5 minutes (a seizure type that Matthew has never had) said to just do labs, give one dose of ativan and send him home. Someday's, I honestly wonder if they care. Today(prior to the ER admission), we had an appointment with the neurosurgeon (he was the doctor that put in Matthew's shunt). I kept the appointment because I wanted him to look at Matthew and see what he thought. I told him what was going on, and he was irate. He said that in no uncertain terms we should take Matthew to Omaha, so that the ER doctors in Omaha would make them come see him. He said that if they tried to send him home without an admission, that I was to call him and he would make sure that Matthew was admitted. He said that sometimes you have to make lazy doctors do their job and this was the way to trump them.
Yes, he actually called these doctors LAZY...frustrating.
I sure wish that Matthew's epileptologists were closer. I would head there in a heart beat. My pediatrician called them for me this morning, because she too, was frustrated with our lack of care, and his epileptologist called her back within 15 minutes. Last time I spoke to her (our pediatrician) she had been trying to get ahold of our local neurologists for over 2 hours to relay the message of what she wanted done for Matthew. I don't know what the answer to the problem is, other than we live in the wrong place to get good neurology care.

I'm off to bed, I'm beat. Update more when I can
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Original post:

I don't have much time to update right now, but do want to let you know Matthew is in the hospital now, still in the ER and unstable, having seizures. He has had 6 seizures in the ER so far, 2 of them longer than 10 minutes. They are not his typical seizures and they have loaded him with 3 different types of seizure medications., and they seem to only be termporarily helping him. His shunt is fine and he is not sick with any illness. I will update again when we get settled in a room, which will probably NOT be soon.

Matthew is learning to eat!

We've struggled with Matthew eating food for many months now. This past week; we have made huge strides. Last Thursday, he ate the best he ever has. Almost as if he never had an oral aversion. Sadly Thursday afternoon he got very sick again and was admitted to the hospital for 36 hours for evaluation. It was determined that he most likely was not sent home on strong enough antibiotics and his pneumonia started to come back. We changed up antibiotics and he is a happy camper. The happiest he's been in weeks. However, the feeding thing has gone a bit backwards. I'm also sad to report that when he was eating SOOO good (like 2 jars of food per meal with no problems) my camera batteries were dead. So no one was able to enjoy it but myself and his pediatrician; who happened to witness it while we were at her office. I did however learn to video it this time; even though it wasn't his best, because we don't know if he'll do it again! So here is a little video, for your viewing pleasure. It is very bumpy, because I was feeding, filming and positioning Matthew at the same time. But, you'll get the idea. And I hope in the days to come I have better video (I promise, I'll put him in his highchair next time!)

Pausing...

I'm going to take a break for a bit from blogging. I'm not sure how long. Our household is crazy busy right now. I'm not getting much sleep with Matthew being so agitated. I'm not in the right frame of mind to blog. I just wanted you to know all is well (other than the agitation) with Matthew. Signing off...

They say we're leaving!!!

Matthew had a bit of a rough night again, agitation wise...but the doctors feel his pneumonia is resolving itself and so will the agitation. Matthew has been off oxygen since late Saturday night, and his white count has decreased by half. We also noticed that he was most agitated when he was getting his IV antibiotics, and that since we've switched to oral antibiotics his agitation has decreased. We're ready to be in our own beds!! We are homeward bound!

We have some answers

Last night around 4:30 the doctor finally came around and took a look at Matthew. She said that even though his chest x-ray from Thursday didn't show pneumonia, every other clinical symptom he had pointed to pneumonia. Matthew's white count was very high (46 thousand) his breathing was rapid and he was requiring a good amount of oxygen to keep his blood level of oxygen in the normal range. The plan was to repeat his chest x-ray, more lab work and to do a CT scan. If he didn't have pneumonia, we needed to rule out a shunt infection. I knew in my heart he didn't have a shunt infection, but we had to figure out where the infection was coming from. The doctor called me about 1/2 hour after he got back from the chest x-ray and said that they found a huge pneumonia; and the reason it didn't show up the day before was probably because he was dehydrated. So they immediately started him on hew antibiotics and we are going to fight this bug.

I was also able to express some of my frustrations. The first doctor that we saw was a newer doctor and we were very unhappy with her care and demeanor. Thankfully the doctor that came in yesterday afternoon is one of our favorite doctors here and she was able to quickly make some important decisions for Matthew. I feel so much better about what is being done for Matthew. I will be even happier, though, when we can leave this place. I'm ready to be home and be in my own bed with our own schedule.

And the going home time frame will all depend on Matthew. He will need to not be dependant on oxygen and then we can switch his antibiotics to oral form and he'll be able to go home. I'm hoping for tomorrow, but I don't feel like that is realistic. Realistically, if we have no further complications, I can see us going home Monday. We're praying for a quick recovery!

From now on out it will be wait and see..but I will try to keep you all updated!

Back again....

Just a quick post to let you all know that Matthew is very sick (again) and back in the hospital. We came yesterday afternoon by ambulance. I don't have a lot of answers and we're unsure of what is wrong. This stay so far has been VERY frustrating to me and I am close to my breaking point. There has been a huge lack of communication and initiating of plan of care for Matthew and we're not sure exactly what is causing him to be so sick. I will update when I know more

We're outta here!!....

That's what the doctors are telling us! Matthew did not require a sedative last night (although we got close; they even called the doctor and got the order), so we think he is slowly showing progress. The doctor today (who is one of our favorites up here) said to expect for him to still be sick for another week (!!!!!!!!). Yikes. Matthew has not opened his eyes since Wednesday. That's a long time. But, I can care for him just as well at home. They are going to send us home with a sedative just in case we need it. So while, he is not "well" yet, they believe the worst is over. The doctor said "see you next time"; and I said "I wish we could say;' see you never again', but I guess I should be a realist" and he just smiled and nodded. Sigh. I guess that is our new normal. At least they have wonderful doctors taking care of us. So we are packing. We are going. Thank you Jesus for allowing to me to take my son home! That was a scary couple of days.

Today's update

Matthew seemed to have a better day and evening yesterday. He mainly slept the whole day; awakening for just an hour or so around supper time. He seems to just out of nowhere spike fevers. Not just any old fever; but like 103 degrees. We are trying to keep him comfortable with Tylenol and ibuprofen. He was also up and semi-agitated around midnight last night; but I was able to calm him and get him back to sleep. He woke me up again around 4 am very agitated; breathing fast and with a high fever. We tried everything, rocking him, snuggling him, bringing him in my bed to snuggle, nothing could get him out of this agitated state. So we again had to give him something to help sedate him. That worked like a charm and he was able to sleep the rest of the night. I'm very reluctant to keep giving him sedatives; but we at this point don't feel like we have a choice. He is so agitated that he is unable to get the rest he needs. All his muscles are stiff and he just wants to sleep as stiff as a board with his back arched. It really is getting tiring to watch your baby keep fighting with this. He seems to sleep better during the day; but night-time is our enemy. The doctors just keep saying that with time, he will get better. I will be glad when this is behind us!

On the home front: Steve still is sick with the flu and Mason has also caught it. As of this morning he says he is feeling better than yesterday; but it seems as if this virus is tricky like that. It makes you think you are better and then side-swipes you again. Megan is currently the lone-ranger; she is the only one who has not fell victim. I'm praying she stays well and that Steve and Mason continue to be on the mend. I have almost fully (other than an occasional irritating cough)recovered from it. I am left with a smaller appetite (that's not a bad thing) and some low energy; but feel strong enough to do all the things I need to.

Matthew's therapist sent us this verse yesterday and it is hanging over his bed:

"We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy.." Colossians 1:11

Thank you so much to everyone who's praying, offering to help our family, and supporting us. It is a helpless feeling situation but we appreciate everything! Continue to pray for Matthew's body to be strong and fight this nasty bug!

The things I don't like to blog about

I don' t even like to blog on days like this. I'll just come out and say it..Matthew's in the hospital; AGAIN. I hate blogging about it so much that the last time we were in the hospital (a month ago) I chose not to; because I get sick of blogging about hospital stays. This time; is no different. But this time; Matthew got VERY sick. Sick enough that this normally cool headed, laid back momma; started to get nervous. Started to worry about the what-if's. H1N1 (a.k.a. swine flu) and a child who is medically complex don't mix well. To say that I have been hyper vigilant over the last few days trying to keep him stable enough to stay out of the hospital is an understatement. My living room looks a bit like a hospital room. Nebulizers, a "special bed" set up for him so he could be comfortable and breathe easy, pedialyte, syringes, medications, diapers, extra jammies, and all the like right there at my disposal. So, yesterday at 4 pm when Matthew started getting more and more agitated (to the point where I couldn't hold him) and he was breathing around 80 breaths a minute (try it, you'll hyperventilate). I called the doctor's office. They said, he's probably in pain from the flu. I first hand, know HOW uncomfortable H1N1 is. It's horrible, you hurt.EVERYWHERE. You want to curl up and crawl into a hole somewhere. So more Tylenol, more ibuprofen. I put oragel on his teeth just in case that his sore gums were adding insult to injury. I used his g-tube extension to "burp" him; so to speak. I couldn't get him comfortable. Still, he was breathing way too fast. Steve (who, by the way, is now incredibly sick with the flu also) was insistent on me taking him the ER. I, however, drug my feet. I said I was sure that I was missing something simple, and that it was probably nothing(read: denial). Finally, I caved, but I was only taking him to the local ER, not Omaha. I was sure it was nothing.



When we got there, they immediately got an IV in (first try!!PRAISE Jesus!), did lab work and a chest xray. All labs were negative and his xray was fine. Matthew was inconsolable. Now that he didn't have any clothes on; he had ripped up his skin on his with his fingernails so hard he was bleeding. I had to put socks on his hands to keep him from scratching himself. He grunted and cried (which by now he was hoarse) and arched and wiggled all over the bed. Holding him didn't seem to help. I called my brother (who is a fellow nurse) to come sit with me. He brought me food. He's the man (oh and he's single; and AWESOME, and good-looking, by the way {shameless plug}) Okay, sorry; got a little off track. Ahem...

The nurse was trying to keep calm; she kept looking at me and saying "thank-you for being so calm; it helps us do our job". Then she started saying things like, " You know he cannot keep breathing this fast for this long, he's going to wear out". I could tell that the longer we were there, the more anxious about him she was getting. She kept her cool, but I knew she was concerned.


They did 3 breathing treatments. Nothing changed. The pediatrician on call came in. He didn't know was else to do. Then they started talking about transport to Omaha. They said he could be admitted there, but if he worsened at all, he would have to quickly be taken to Omaha. They talked about trying to sedate him, but they were worried his breathing would be affected even more. They also talked about the possibility of intubating him if he got worse. THEN I got scared. I started getting images in my mind of things going bad and frantic transports to another hospital that is over 50 miles away. We decided it would be best to go to Omaha now. They talked for awhile about taking the helicopter...the helicopter??..I didn't want to go in the helicopter!! I started wondering if he was worse off than I realized. They did some additional lab work to check his oxygen levels in his blood and determined in the end that we could go by ambulance. I was semi-relieved.



We rolled into Omaha around 1am and then spent time in their ER. They weren't sure if they were going to need to admit him to the PICU or to a regular floor. Matthew was all the while agitated and still breathing fast. We did finally get into a room around 2 a.m. Despite attempts to just let him be and calm, he wouldn't. They finally gave him something to calm him and as I'm writing this, he is still asleep. He must be exhausted. He was agitated and breathing hard yesterday for around 10-12 hours. I'm hoping he sleeps today...the nurses are trying very hard to let him sleep and coordinate times of doing things to him.


As much as I hate blogging about these hospital stays; I am forever grateful to you out there who care so much about Matthew and keep up on our family. Thank you for praying. Thank you for caring. I am grateful to have an outlet to keep you all informed. I maybe as much don't hate the blogging part of it; as the actual being in the hospital. I long for my bed, my family and our routine. I long to have some normalcy (is that a word?) to our lives. Matthew will hopefully soon be on the way back home again. He needs rest and time. H1N1 is UGLY. I wouldn't wish it on anyone.

Still sick..

Just a quick update to let you know the status in our home. Matthew is still pretty sick; although he did sleep better last night than the night before. I am pretty much on the mend, although it has left me weak and with a wonderful cough. I won't complain though, because I feel 100 times better than I did on Monday. Steve, however, has been taken victim. He is as sick as I was on Monday. We're pretty sure Micah brought this home from a science camp he went to last week, as he was sick Friday. We're just hoping the other two kids don't get it! Thank you for praying! Please continue to pray for Matthew, I don't think he's quite out of the woods yet.



Here is Matthew's bed the last couple of days. It's the kids' snow tube that is elevated on one of our couch pillows. He's laying snuggled in his fleece blanket. I wiggles and moves when he does; probably sort of like a airmattress. It also keeps him snuggled up in the center. He seems very comfortable.