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Tuesday, June 22, 2010

Another home run for this little slugger...

Let me say, it has been one long day! Surgery went well. Both surgeons were there together and got the procedures done fairly quickly. Joshua's tongue was clipped. His vocal cords, airway and lungs were examined. The adenoids were partially removed (the surgeon said they looked really nasty, aka infected). His sinus was cultured. The heart scan was completed. They did have to use the aggitated (bubble filled) saline contrast, but they were able to avoid going in through the esophagus with the ultrasound equipment and he didn't have any averse reactions. So that was positive!

All in all, the amount of time he was in the operating room was pretty short... just about an hour. The completely horrifying part was that he had trouble waking up from the anesthesia. We waited for him in the recovery waiting room for over an hour and a half! This is a kid who usually pops his head up from the stretcher bed as he's being wheeled out of the O.R. I don't have to say that Nick and I were sweating bullets when he wasn't awake after the 20 minutes they say is the standard "wake up" time.

But, he did wake up, thank God!! He is super tired... didn't stop him from trying to jump out of the bed and run to the car himself though, lol. He slept in the car and he is sleeping at home in bed now. He is s trooper!

The results were a little confusing. The heart stuff was great. Cardio was able to see what he needed and is confident that the clip sealing off the artery that connects the aorta and pulmonary artery is tight and there are no leaks or tears. He just wants to go back to the office and review Joshua's whole chart and results before discharging him for sure. He is really a wonderful man. He gave us his cell phone number to call in a couple days and he shook both our hands and hugged us, lol. You've gotta love doctors/surgeons/specialists that truly care about your child and yourself. So that is that.

The results of the ENT stuff is what boggles our minds. It was already determined that Joshua aspirates thin liquids when he swallows. His water, juice, ect has to be thickened with a special food thickener. He also has a very low and raspy voice. This was the main reason the surgeon had to do the study. It was highly suspected that Josh aspirates because of a paralyzed vocal cord from a previous surgery, or because of a nodule or build up of scar tissue from all of the forceful intubations he has had. This part of the procedure was to determine which of these were the reason and the severity of the condition. However, he has none of these things. His cords are not paralyzed, there is a smooth, clear passage... no scar tissue, no nodules, nothing! His voice box looks good and so do his lungs. So then why the heck can't this kid protect his airway when he drinks??? The surgeon has no idea! So, the window to the unknown is opened again and we don't know what this means.

The other ENT results were that he was born with an extra bronchus, which apparently is a benign condition and will not be of any concern. And, hopefully the removal of some of those infected adenoids will help his nasal congestion and compaction. We have to wait 72 hours for the results on the sinus culture. We will see if there is infection there too. He has a deviated septum that closes off his right nostril... another reason he breaths through his nose at night. But that we already knew.

Here are some pictures of Joshua throughout the day.
What a handsome kid, even when he is feeling under the weather.
Click on image to view larger.

In the car and in the parking garage this morning

In hospital and getting BP taken before surgery

In recovery after surgery, showing mom his IV board

Playing with his Buzz balloon that Mommy & Daddy bought him,
and sleeping in the car during the drive home!

Passed out in bed at home

The goods our little guy scored today!

Surgery @ noon!

No energy to think right now... surgery is at noon. This never gets any easier!! You would think we would be used to this by now, lol. Scared, confused, sad, reluctant... shall I go on.

May God surround Joshua today and keep him safe through these procedures. Bring forth good results and outcomes Lord. Amen.

My Facebook status: Please think of Josh today. He's going into surgery at noon... multiple procedures, one of which is particularly scary. Everyone's prayers have always meant so much to us, and we see them work. So here I am, asking for them again! :)

Monday, June 7, 2010

Monday Memories Cont'd...

This memory is something I thank God about. I don't often remember that this happened because I was becoming increasingly ill at this time. However, for some reason, it popped into my mind as I was thinking of being in the hospital. When I was first admitted with Preeclampsia, I went directly to the local birth place. They started all kinds of junk on me... IV's, catheter's, steroid shots, magnisium sulfate (can I say YUCK!?) ect. When we realized Joshua was going to be born very soon after this I requested being transferred to a hospital that is one county up from mine. It houses a level 3 neonatal intensive care, which we were told Joshua would undoubtedly need. Rather than medflighting Joshua over there after birth, I wanted to already be there for delivery so he wouldn't have to take on that extra stress of transport. So, my doctor came in and spent the 2 hours plus that it took to sign me over to another hospital and they sent a ground transport ambulance to get me. I was getting sicker and sicker and feeling absolutely horrible at this time. The last thing I wanted to do was go to this hospital all alone. I was scared, I literally thought I was going to die and I had no idea what was ahead. The EMT/paramedic crew told us that Nick wasn't allowed to come with me on the ride and that I had to go alone. My worst fear! So we started begging them, lol. One of the men on the crew ended up realizing that we were 911 dispatchers and that we've actually communicated over the radio before. It wasn't long after when he decided there was no way he was letting me go by myself when I was that nervous. They got me on a stretcher, shoved me into the tiniest ambulance I've ever seen and Nick climbed in behind me. That was the longest drive of my life. I had to lay on my side the whole time (with IV's, magnesium and a catheter) and try not to vomit every time the bus bounced around. When I think about this, I remember a feeling of not being able to see out of my own eyes. I can still fuzzily picture the huge atrium of the hospital and remember thinking it looked more like a hotel. I thank God that the crew was so nice to me and that Nick was allowed to take the plunge into uncertaintly with me! I can honestly say that was one benefit of the job ;)

Monday Memories...

While driving in the car this morning my mind was taking me back to being in the hospital before Joshua's delivery. I realized how many memories I have that my over stressed, over crowded brain is going to forget soon. I often see other bloggers choose a day to write about something particular, so I thought that would be a good outlet for me too (yes, I am a follower at times). Anyway, I chose Monday partly because it happened to be the day I thought of this idea, and partly because the words memory and Monday both start with the letter M. So, I am going to try my hardest to post a memory from my pregnancy and NICU experience every Monday. Sitting here now, I already, for the life of me, cannot remember the memory I was having this morning in the car! For this reason, I am so excited to get these thoughts written down. Of course they will not be in order of how they actually unfolded, but at least I'll have them documented since this was perhaps my first and only pregnancy. As difficult, scary and heartbreaking as it was, it was still a very special time in our lives. I'm off to prepare today's memory (while my husband is cooking in the kitchen!)

Sunday, June 6, 2010

3rd Birthday Pictures...

I am out of words for today, but I wanted to post some pics from Joshua's birthday party before too much time elapses. We all know I am horrible at posting updates in a timely fashion, lol. It was a great little get together. Joshua loved it.

Lightning McQueen

Power Wheel

Cars Digital Camera

McQueenn Scooter

Sail Fruit Boat with Toy Story Figures

A Bobbie Cake

Sticking his finger in the cake

Mud Pie For Easy Eating

Thursday, June 3, 2010

Well, heart study is a go...

Yikes! Let the nerves roll out of my hands and into God's please! Ha ha... I just spent the last hour (plus) on the phone with, I think, seven different people regarding Joshua's upcoming surgeries. My head is literally spinning, lol. Anxiety is flooding my stomach and I feel a bit sweaty. I went back and forth between the hospital coordinator, ENT nurse, ENT scheduler, Cardiology Nurse, Cardiology Scheduler, to even the Cardiologist himself! Okay, that's only six people, but I'm sure I'm forgetting someone ;) Anyway, last week we decided to hold off on the heart contrast study for another couple years. Nick and I have been very apprehensive about this procedure, and the cardio nurse said the doctor agreed it would be ok to wait. But today, the situation is different. After speaking directly over the phone, the Cardiologist and Nick and I feel it is best to go ahead with it now. Of course the Cardiologist is coordinating this procedure with the ENT so we are killing 2 huge birds with one stone... hopefully! Surgery, of any kind, sucks and I wish these darn things would end. I keep thinking of the day we will be able to wake up in the morning and smile about the fact there are no health concerns, feeding, speech and development issues or surgery procedures to worry about. Gosh that day can't come any sooner! For now we just keep holding our breath and praying for the successful and blessed outcomes we keep receiving. We are so fortunate, I just wish that made these things easier. The new date will be June 22nd because the cardiologist wanted to be the one to do the procedure himself. Not the on call person. That is something that makes up very comfortable. We could not ask for better caretakers!

Tuesday, June 1, 2010

Still aspirating...

We went for a swallow OPMS study today. Yes, on Joshua's 3rd birthday! This is actually not the first year we've spent his birthday in a medical center. We did so last year as well. There are just so many doctors, therapists, studies and exams and there are often slim pickings when it comes to days and times of scheduling them. So we take what we can get. Today's morning was spent in the radiology department of Joshua's specialist hospital. We love it there! If you live a great deal of your life in these settings, there is no better hands to be in than those of the health care professionals of this hospital. It is truly the most serene environment for the kids and their mama's and papa's! This pic is of Joshua today with his hospital bracelet on :)

Anyway, off subject again... his swallow study went well today. We were successful in getting him to drink the liquids he needed to! We brought Dora and Cars cups from the party last night for him to drink from and the SLP added Strawberry Nestle Quick to the barium contrast. This significantly aided the ease of the procedure. But, he is still aspirating of course. Nick and I were both hoping that he was going to show that he has improved, but that wasn't the case. I always get that gut wrenching/sinking feeling in my stomach when I hear the radiologist pause and scream out... "bla bla bla ASPIRATION" lol. I just want to yell out the D word. Like she just crushed down my last ray of hope... "No, there is nothing wrong with my son you liar!" But that would be the irrational/human side of me coming to the surface. So I remain calm, introverted with my feelings and continue on as the supportive and strong mother people see me as. If they could only catch a glimpse of my heart and my mind.

The good news is that he has not worsened!! He is still on a moderatley low amount of thickening and he tolerates it. The situation could be much worse. I hold on to that fact and thank God that while we have to deal with daily stuggles and complications, we are blessed to not be dealt even more difficult cards. All in all it was a good morning/afternoon birthday. Josh spent it happy, healthy and entertained. He ran the halls of the hospital with his Buzz Lightyear flip flops, played the lobby piano, watched some Disney, colored, had his picutre taken and played some more! I don't think the kid minded... not too shabby!